Category Archives: ethics

Toronto’s ArtSci Salon and its Kaleidoscopic Imaginations on Oct 27, 2020 – 7:30 pm (EDT)

The ArtSci Salon is getting quite active these days. Here’s the latest from an Oct. 22, 2020 ArtSci Salon announcement (received via email), which can also be viewed on their Kaleidoscope event page,

Kaleidoscopic Imaginations

Performing togetherness in empty spaces

An experimental  collaboration between the ArtSci Salon, the Digital Dramaturgy Lab_squared/ DDL2 and Sensorium: Centre for Digital Arts and Technology, York University (Toronto, Ontario, Canada)

Tuesday, October 27, 2020

7:30 pm [EDT]

Join our evening of live-streamed, multi-media  performances, following a kaleidoscopic dramaturgy of complexity discourses as inspired by computational complexity theory gatherings.

We are presenting installations, site-specific artistic interventions and media experiments, featuring networked audio and video, dance and performances as we repopulate spaces – The Fields Institute and surroundings – forced to lie empty due to the pandemic. Respecting physical distance and new sanitation and safety rules can be challenging, but it can also open up new ideas and opportunities.

NOTE: DDL2  contributions to this event are sourced or inspired by their recent kaleidoscopic performance “Rattling the the Curve – Paradoxical ECODATA performances of A/I (artistic intelligence), and facial recognition of humans and trees

Virtual space/live streaming concept and design: DDL2  Antje Budde, Karyn McCallum and Don Sinclair

Virtual space and streaming pilot: Don Sinclair

Here are specific programme details (from the announcement),

  1. Signing the Virus – Video (2 min.)
    Collaborators: DDL2 Antje Budde, Felipe Cervera, Grace Whiskin
  2. Niimi II – – Performance and outdoor video projection (15 min.)
    (Nimii means in Anishinaabemowin: s/he dances) Collaborators: DDL2 Candy Blair, Antje Budde, Jill Carter, Lars Crosby, Nina Czegledy, Dave Kemp
  3. Oracle Jane (Scene 2) – A partial playreading on the politics of AI (30 min.)
    Playwright: DDL2 Oracle Collaborators: DDL2 Antje Budde, Frans Robinow, George Bwannika Seremba, Amy Wong and AI ethics consultant Vicki Zhang
  4. Vriksha/Tree – Dance video and outdoor projection (8 min.)
    Collaborators: DDL2 Antje Budde, Lars Crosby, Astad Deboo, Dave Kemp, Amit Kumar
  5. Facial Recognition – Performing a Plate Camera from a Distance (3 min.)
    Collaborators: DDL2 Antje Budde, Jill Carter, Felipe Cervera, Nina Czegledy, Karyn McCallum, Lars Crosby, Martin Kulinna, Montgomery C. Martin, George Bwanika Seremba, Don Sinclair, Heike Sommer
  6. Cutting Edge – Growing Data (6 min.)
    DDL2 A performance by Antje Budde
  7. “void * ambience” – Architectural and instrumental acoustics, projection mapping Concept: Sensorium: The Centre for Digital Art and Technology, York University Collaborators: Michael Palumbo, Ilze Briede [Kavi], Debashis Sinha, Joel Ong

This performance is part of a series (from the announcement),

These three performances are part of Boundary-Crossings: Multiscalar Entanglements in Art, Science and Society, a public Outreach program supported by the Fiends [sic] Institute for Research in Mathematical Science. Boundary Crossings is a series exploring how the notion of boundaries can be transcended and dissolved in the arts and the humanities, the biological and the mathematical sciences, as well as human geography and political economy. Boundaries are used to establish delimitations among disciplines; to discriminate between the human and the non-human (body and technologies, body and bacteria); and to indicate physical and/or artificial boundaries, separating geographical areas and nation states. Our goal is to cross these boundaries by proposing new narratives to show how the distinctions, and the barriers that science, technology, society and the state have created can in fact be re-interpreted as porous and woven together.

This event is curated and produced by ArtSci Salon; Digital Dramaturgy Lab_squared/ DDL2; Sensorium: Centre for Digital Arts and Technology, York University; and Ryerson University; it is supported by The Fields Institute for Research in Mathematical Sciences

Streaming Link 

Finally, the announcement includes biographical information about all of the ‘boundary-crossers’,

Candy Blair (Tkaron:to/Toronto)
Candy Blair/Otsίkh:èta (they/them) is a mixed First Nations/European,
2-spirit interdisciplinary visual and performing artist from Tio’tía:ke – where the group split (“Montreal”) in Québec.

While continuing their work as an artist they also finished their Creative Arts, Literature, and Languages program at Marianopolis College (cégep), their 1st year in the Theatre program at York University, and their 3rd year Acting Conservatory Program at the Centre For Indigenous Theatre in Tsí Tkaròn:to – Where the trees stand in water (Toronto”).

Some of Candy’s noteable performances are Jill Carter’s Encounters at the Edge of the Woods, exploring a range of issues with colonization; Ange Loft’s project Talking Treaties, discussing the treaties of the “Toronto” purchase; Cheri Maracle’s The Story of Six Nations, exploring Six Nation’s origin story through dance/combat choreography, and several other performances, exploring various topics around Indigenous language, land, and cultural restoration through various mediums such as dance,
modelling, painting, theatre, directing, song, etc. As an activist and soon to be entrepreneur, Candy also enjoys teaching workshops around promoting Indigenous resurgence such as Indigenous hand drumming, food sovereignty, beading, medicine knowledge, etc..

Working with their collectives like Weave and Mend, they were responsible for the design, land purification, and installation process of the four medicine plots and a community space with their 3 other members. Candy aspires to continue exploring ways of decolonization through healthy traditional practices from their mixed background and the arts in the hopes of eventually supporting Indigenous relations
worldwide.

Antje Budde
Antje Budde is a conceptual, queer-feminist, interdisciplinary experimental scholar-artist and an Associate Professor of Theatre Studies, Cultural Communication and Modern Chinese Studies at the Centre for Drama, Theatre and Performance Studies, University of Toronto. Antje has created multi-disciplinary artistic works in Germany, China and Canada and works tri-lingually in German, English and Mandarin. She is the founder of a number of queerly feminist performing art projects including most recently the (DDL)2 or (Digital Dramaturgy Lab)Squared – a platform for experimental explorations of digital culture, creative labor, integration of arts and science, and technology in performance. She is interested in the intersections of natural sciences, the arts, engineering and computer science.

Roberta Buiani
Roberta Buiani (MA; PhD York University) is the Artistic Director of the ArtSci Salon at the Fields Institute for Research in Mathematical Sciences (Toronto). Her artistic work has travelled to art festivals (Transmediale; Hemispheric Institute Encuentro; Brazil), community centres and galleries (the Free Gallery Toronto; Immigrant Movement
International, Queens, Myseum of Toronto), and science institutions (RPI; the Fields Institute). Her writing has appeared on Space and Culture, Cultural Studies and The Canadian Journal of Communication_among others. With the ArtSci Salon she has launched a series of experiments in “squatting academia”, by re-populating abandoned spaces and cabinets across university campuses with SciArt installations.

Currently, she is a research associate at the Centre for Feminist Research and a Scholar in Residence at Sensorium: Centre for Digital Arts and Technology at York University [Toronto, Ontario, Canada].

Jill Carter (Tkaron:to/ Toronto)
Jill (Anishinaabe/Ashkenazi) is a theatre practitioner and researcher, currently cross appointed to the Centre for Drama, Theatre and Performance Studies; the Transitional Year Programme; and Indigenous Studies at the University of Toronto. She works with many members of Tkaron:to’s Indigenous theatre community to support the development of new works and to disseminate artistic objectives, process, and outcomes through community- driven research projects. Her scholarly research,
creative projects, and activism are built upon ongoing relationships with Indigenous Elders, Artists and Activists, positioning her as witness to, participant in, and disseminator of oral histories that speak to the application of Indigenous aesthetic principles and traditional knowledge systems to contemporary performance.The research questions she pursues revolve around the mechanics of story creation,
the processes of delivery and the manufacture of affect.

More recently, she has concentrated upon Indigenous pedagogical models for the rehearsal studio and the lecture hall; the application of Indigenous [insurgent] research methods within performance studies; the politics of land acknowledgements; and land – based dramaturgies/activations/interventions.

Jill also works as a researcher and tour guide with First Story Toronto; facilitates Land Acknowledgement, Devising, and Land-based Dramaturgy Workshops for theatre makers in this city; and performs with the Talking Treaties Collective (Jumblies Theatre, Toronto).

In September 2019, Jill directed Encounters at the Edge of the Woods. This was a devised show, featuring Indigenous and Settler voices, and it opened Hart House Theatre’s 100th season; it is the first instance of Indigenous presence on Hart House Theatre’s stage in its 100 years of existence as the cradle for Canadian theatre.

Nina Czegledy
(Toronto) artist, curator, educator, works internationally on collaborative art, science & technology projects. The changing perception of the human body and its environment as well as paradigm shifts in the arts inform her projects. She has exhibited and published widely, won awards for her artwork and has initiated, lead and participated in workshops, forums and festivals worldwide at international events.

Astad Deboo (Mumbai, India)
Astad Deboo is a contemporary dancer and choreographer who employs his
training in Indian classical dance forms of Kathak as well as Kathakali to create a dance form that is unique to him. He has become a pioneer of modern dance in India. Astad describes his style as “contemporary in vocabulary and traditional in restraints.” Throughout his long and illustrious career, he has worked with various prominent performers such as Pina Bausch, Alis on Becker Chase and Pink Floyd and performed in many parts of the world. He has been awarded the Sangeet Natak Akademi Award (1996) and Padma Shri (2007), awarded by the Government of India. In January 2005 along with 12 young women with hearing impairment supported by the Astad Deboo Dance Foundation, he performed at the 20th Annual Deaf Olympics at Melbourne, Australia. Astad has a long record of working with disadvantaged youth.

Ilze Briede [Kavi]
Ilze Briede [artist name: Kavi] is a Latvian/Canadian artist and researcher with broad and diverse interests. Her artistic practice, a hybrid of video, image and object making, investigates the phenomenon of perception and the constraints and boundaries between the senses and knowing. Kavi is currently pursuing a PhD degree in Digital Media at York University with a research focus on computational creativity and generative art. She sees computer-generated systems and algorithms as a potentiality for co-creation and collaboration between human and machine. Kavi has previously worked and exhibited with Fashion Art Toronto, Kensington Market Art Fair, Toronto Burlesque Festival, Nuit Blanche, Sidewalk Toronto and the Toronto Symphony Orchestra.

Dave Kemp
Dave Kemp is a visual artist whose practice looks at the intersections and interactions between art, science and technology: particularly at how these fields shape our perception and understanding of the world. His artworks have been exhibited widely at venues such as at the McIntosh Gallery, The Agnes Etherington Art Centre, Art Gallery of Mississauga, The Ontario Science Centre, York Quay Gallery, Interaccess,
Modern Fuel Artist-Run Centre, and as part of the Switch video festival in Nenagh, Ireland. His works are also included in the permanent collections of the Agnes Etherington Art Centre and the Canada Council Art Bank.

Stephen Morris
Stephen Morris is Professor of experimental non-linear Physics in the faculty of Physics at the University of Toronto. He is the scientific Director of the ArtSci salon at the Fields Institute for Research in Mathematical Sciences. He often collaborates with artists and has himself performed and produced art involving his own scientific instruments and experiments in non-linear physics and pattern formation

Michael Palumbo
Michael Palumbo (MA, BFA) is an electroacoustic music improviser, coder, and researcher. His PhD research spans distributed creativity and version control systems, and is expressed through “git show”, a distributed electroacoustic music composition and design experiment, and “Mischmasch”, a collaborative modular synthesizer in virtual reality. He studies with Dr. Doug Van Nort as a researcher in the Distributed
Performance and Sensorial Immersion Lab, and Dr. Graham Wakefield at the Alice Lab for Computational Worldmaking. His works have been presented internationally, including at ISEA, AES, NIME, Expo ’74, TIES, and the Network Music Festival. He performs regularly with a modular synthesizer, runs the Exit Points electroacoustic improvisation series, and is an enthusiastic gardener and yoga practitioner.

Joel Ong (PhD. Digital Arts and Experimental Media (DXARTS, University
of Washington)

Joel Ong is a media artist whose works connect scientific and artistic approaches to the environment, particularly with respect to sound and physical space.  Professor Ong’s work explores the way objects and spaces can function as repositories of ‘frozen sound’, and in elucidating these, he is interested in creating what systems theorist Jack Burnham (1968) refers to as “art (that) does not reside in material entities, but in relations between people and between people and the components of their environment”.

A serial collaborator, Professor Ong is invested in the broader scope of Art-Science collaborations and is engaged constantly in the discourses and processes that facilitate viewing these two polemical disciplines on similar ground.  His graduate interdisciplinary work in nanotechnology and sound was conducted at SymbioticA, the Center of Excellence for Biological Arts at the University of Western Australia and supervised by BioArt pioneers and TCA (The Tissue Culture and Art Project) artists Dr Ionat Zurr and Oron Catts.

George Bwanika Seremba
George Bwanika Seremba,is an actor, playwright and scholar. He was born
in Uganda. George holds an M. Phil, and a Ph.D. in Theatre Studies, from Trinity
College Dublin. In 1980, having barely survived a botched execution by the Military Intelligence, he fled into exile, resettling in Canada (1983). He has performed in numerous plays including in his own, “Come Good Rain”, which was awarded a Dora award (1993). In addition, he published a number of edited play collections including “Beyond the pale: dramatic writing from First Nations writers & writers of colour” co-edited by Yvette Nolan, Betty Quan, George Bwanika Seremba. (1996).

George was nominated for the Irish Times’ Best Actor award in Dublin’s Calypso Theatre’s for his role in Athol Fugard’s “Master Harold and the boys”. In addition to theatre he performed in several movies and on television. His doctoral thesis (2008) entitled “Robert Serumaga and the Golden Age of Uganda’s Theatre (1968-1978): (Solipsism, Activism, Innovation)” will be published as a monograph by CSP (U.K) in 2021.

Don Sinclair (Toronto)
Don is Associate Professor in the Department of Computational Arts at York University. His creative research areas include interactive performance, projections for dance, sound art, web and data art, cycling art, sustainability, and choral singing most often using code and programming. Don is particularly interested in processes of artistic creation that integrate digital creative coding-based practices with performance in dance and theatre. As well, he is an enthusiastic cyclist.

Debashis Sinha
Driven by a deep commitment to the primacy of sound in creative expression, Debashis Sinha has realized projects in radiophonic art, music, sound art, audiovisual performance, theatre, dance, and music across Canada and internationally. Sound design and composition credits include numerous works for Peggy Baker Dance Projects and productions with Canada’s premiere theatre companies including The Stratford Festival, Soulpepper, Volcano Theatre, Young People’s Theatre, Project Humanity, The Theatre Centre, Nightwood Theatre, Why Not Theatre, MTC Warehouse and Necessary Angel. His live sound practice on the concert stage has led to appearances at MUTEK Montreal, MUTEK Japan, the Guelph Jazz Festival, the Banff Centre, The Music Gallery, and other venues. Sinha teaches sound design at York University and the National Theatre School, and is currently working on a multi-part audio/performance work incorporating machine learning and AI funded by the Canada Council for the Arts.

Vicki (Jingjing) Zhang (Toronto)
Vicki Zhang is a faculty member at University of Toronto’s statistics department. She is the author of Uncalculated Risks (Canadian Scholar’s Press, 2014). She is also a playwright, whose plays have been produced or stage read in various festivals and venues in Canada including Toronto’s New Ideas Festival, Winnipeg’s FemFest, Hamilton Fringe Festival, Ergo Pink Fest, InspiraTO festival, Toronto’s Festival of Original Theatre (FOOT), Asper Center for Theatre and Film, Canadian Museum for Human Rights, Cultural Pluralism in the Arts Movement Ontario (CPAMO), and the Canadian Play Thing. She has also written essays and short fiction for Rookie Magazine and Thread.

If you can’t attend this Oct. 27, 2020 event, there’s still the Oct. 29, 2020 Boundary-Crossings event: Beauty Kit (see my Oct. 12, 2020 posting for more).

As for Kaleidoscopic Imaginations, you can access the Streaming Link On Oct. 27, 2020 at 7:30 pm EDT (4 pm PDT).

Technical University of Munich: embedded ethics approach for AI (artificial intelligence) and storing a tv series in synthetic DNA

I stumbled across two news bits of interest from the Technical University of Munich in one day (Sept. 1, 2020, I think). The topics: artificial intelligence (AI) and synthetic DNA (deoxyribonucleic acid).

Embedded ethics and artificial intelligence (AI)

An August 27, 2020 Technical University of Munich (TUM) press release (also on EurekAlert but published Sept. 1, 2020) features information about a proposal to embed ethicists in with AI development teams,

The increasing use of AI (artificial intelligence) in the development of new medical technologies demands greater attention to ethical aspects. An interdisciplinary team at the Technical University of Munich (TUM) advocates the integration of ethics from the very beginning of the development process of new technologies. Alena Buyx, Professor of Ethics in Medicine and Health Technologies, explains the embedded ethics approach.

Professor Buyx, the discussions surrounding a greater emphasis on ethics in AI research have greatly intensified in recent years, to the point where one might speak of “ethics hype” …

Prof. Buyx: … and many committees in Germany and around the world such as the German Ethics Council or the EU Commission High-Level Expert Group on Artificial Intelligence have responded. They are all in agreement: We need more ethics in the development of AI-based health technologies. But how do things look in practice for engineers and designers? Concrete solutions are still few and far between. In a joint pilot project with two Integrative Research Centers at TUM, the Munich School of Robotics and Machine Intelligence (MSRM) with its director, Prof. Sami Haddadin, and the Munich Center for Technology in Society (MCTS), with Prof. Ruth Müller, we want to try out the embedded ethics approach. We published the proposal in Nature Machine Intelligence at the end of July [2020].

What exactly is meant by the “embedded ethics approach”?

Prof.Buyx: The idea is to make ethics an integral part of the research process by integrating ethicists into the AI development team from day one. For example, they attend team meetings on a regular basis and create a sort of “ethical awareness” for certain issues. They also raise and analyze specific ethical and social issues.

Is there an example of this concept in practice?

Prof. Buyx: The Geriatronics Research Center, a flagship project of the MSRM in Garmisch-Partenkirchen, is developing robot assistants to enable people to live independently in old age. The center’s initiatives will include the construction of model apartments designed to try out residential concepts where seniors share their living space with robots. At a joint meeting with the participating engineers, it was noted that the idea of using an open concept layout everywhere in the units – with few doors or individual rooms – would give the robots considerable range of motion. With the seniors, however, this living concept could prove upsetting because they are used to having private spaces. At the outset, the engineers had not given explicit consideration to this aspect.

Prof.Buyx: The approach sounds promising. But how can we avoid “embedded ethics” from turning into an “ethics washing” exercise, offering companies a comforting sense of “being on the safe side” when developing new AI technologies?

That’s not something we can be certain of avoiding. The key is mutual openness and a willingness to listen, with the goal of finding a common language – and subsequently being prepared to effectively implement the ethical aspects. At TUM we are ideally positioned to achieve this. Prof. Sami Haddadin, the director of the MSRM, is also a member of the EU High-Level Group of Artificial Intelligence. In his research, he is guided by the concept of human centered engineering. Consequently, he has supported the idea of embedded ethics from the very beginning. But one thing is certain: Embedded ethics alone will not suddenly make AI “turn ethical”. Ultimately, that will require laws, codes of conduct and possibly state incentives.

Here’s a link to and a citation for the paper espousing the embedded ethics for AI development approach,

An embedded ethics approach for AI development by Stuart McLennan, Amelia Fiske, Leo Anthony Celi, Ruth Müller, Jan Harder, Konstantin Ritt, Sami Haddadin & Alena Buyx. Nature Machine Intelligence (2020) DOI: https://doi.org/10.1038/s42256-020-0214-1 Published 31 July 2020

This paper is behind a paywall.

Religion, ethics and and AI

For some reason embedded ethics and AI got me to thinking about Pope Francis and other religious leaders.

The Roman Catholic Church and AI

There was a recent announcement that the Roman Catholic Church will be working with MicroSoft and IBM on AI and ethics (from a February 28, 2020 article by Jen Copestake for British Broadcasting Corporation (BBC) news online (Note: A link has been removed),

Leaders from the two tech giants met senior church officials in Rome, and agreed to collaborate on “human-centred” ways of designing AI.

Microsoft president Brad Smith admitted some people may “think of us as strange bedfellows” at the signing event.

“But I think the world needs people from different places to come together,” he said.

The call was supported by Pope Francis, in his first detailed remarks about the impact of artificial intelligence on humanity.

The Rome Call for Ethics [sic] was co-signed by Mr Smith, IBM executive vice-president John Kelly and president of the Pontifical Academy for Life Archbishop Vincenzo Paglia.

It puts humans at the centre of new technologies, asking for AI to be designed with a focus on the good of the environment and “our common and shared home and of its human inhabitants”.

Framing the current era as a “renAIssance”, the speakers said the invention of artificial intelligence would be as significant to human development as the invention of the printing press or combustion engine.

UN Food and Agricultural Organization director Qu Dongyu and Italy’s technology minister Paola Pisano were also co-signatories.

Hannah Brockhaus’s February 28, 2020 article for the Catholic News Agency provides some details missing from the BBC report and I found it quite helpful when trying to understand the various pieces that make up this initiative,

The Pontifical Academy for Life signed Friday [February 28, 2020], alongside presidents of IBM and Microsoft, a call for ethical and responsible use of artificial intelligence technologies.

According to the document, “the sponsors of the call express their desire to work together, in this context and at a national and international level, to promote ‘algor-ethics.’”

“Algor-ethics,” according to the text, is the ethical use of artificial intelligence according to the principles of transparency, inclusion, responsibility, impartiality, reliability, security, and privacy.

The signing of the “Rome Call for AI Ethics [PDF]” took place as part of the 2020 assembly of the Pontifical Academy for Life, which was held Feb. 26-28 [2020] on the theme of artificial intelligence.

One part of the assembly was dedicated to private meetings of the academics of the Pontifical Academy for Life. The second was a workshop on AI and ethics that drew 356 participants from 41 countries.

On the morning of Feb. 28 [2020], a public event took place called “renAIssance. For a Humanistic Artificial Intelligence” and included the signing of the AI document by Microsoft President Brad Smith, and IBM Executive Vice-president John Kelly III.

The Director General of FAO, Dongyu Qu, and politician Paola Pisano, representing the Italian government, also signed.

The president of the European Parliament, David Sassoli, was also present Feb. 28.

Pope Francis canceled his scheduled appearance at the event due to feeling unwell. His prepared remarks were read by Archbishop Vincenzo Paglia, president of the Academy for Life.

You can find Pope Francis’s comments about the document here (if you’re not comfortable reading Italian, hopefully, the English translation which follows directly afterward will be helpful). The Pope’s AI initiative has a dedicated website, Rome Call for AI ethics, and while most of the material dates from the February 2020 announcement, they are keeping up a blog. It has two entries, one dated in May 2020 and another in September 2020.

Buddhism and AI

The Dalai Lama is well known for having an interest in science and having hosted scientists for various dialogues. So, I was able to track down a November 10, 2016 article by Ariel Conn for the futureoflife.org website, which features his insights on the matter,

The question of what it means and what it takes to feel needed is an important problem for ethicists and philosophers, but it may be just as important for AI researchers to consider. The Dalai Lama argues that lack of meaning and purpose in one’s work increases frustration and dissatisfaction among even those who are gainfully employed.

“The problem,” says the Dalai Lama, “is … the growing number of people who feel they are no longer useful, no longer needed, no longer one with their societies. … Feeling superfluous is a blow to the human spirit. It leads to social isolation and emotional pain, and creates the conditions for negative emotions to take root.”

If feeling needed and feeling useful are necessary for happiness, then AI researchers may face a conundrum. Many researchers hope that job loss due to artificial intelligence and automation could, in the end, provide people with more leisure time to pursue enjoyable activities. But if the key to happiness is feeling useful and needed, then a society without work could be just as emotionally challenging as today’s career-based societies, and possibly worse.

I also found a talk on the topic by The Venerable Tenzin Priyadarshi, first here’s a description from his bio at the Dalai Lama Center for Ethics and Transformative Values webspace on the Massachusetts Institute of Technology (MIT) website,

… an innovative thinker, philosopher, educator and a polymath monk. He is Director of the Ethics Initiative at the MIT Media Lab and President & CEO of The Dalai Lama Center for Ethics and Transformative Values at the Massachusetts Institute of Technology. Venerable Tenzin’s unusual background encompasses entering a Buddhist monastery at the age of ten and receiving graduate education at Harvard University with degrees ranging from Philosophy to Physics to International Relations. He is a Tribeca Disruptive Fellow and a Fellow at the Center for Advanced Study in Behavioral Sciences at Stanford University. Venerable Tenzin serves on the boards of a number of academic, humanitarian, and religious organizations. He is the recipient of several recognitions and awards and received Harvard’s Distinguished Alumni Honors for his visionary contributions to humanity.

He gave the 2018 Roger W. Heyns Lecture in Religion and Society at Stanford University on the topic, “Religious and Ethical Dimensions of Artificial Intelligence.” The video runs over one hour but he is a sprightly speaker (in comparison to other Buddhist speakers I’ve listened to over the years).

Judaism, Islam, and other Abrahamic faiths examine AI and ethics

I was delighted to find this January 30, 2020 Artificial Intelligence: Implications for Ethics and Religion event as it brought together a range of thinkers from various faiths and disciplines,

New technologies are transforming our world every day, and the pace of change is only accelerating.  In coming years, human beings will create machines capable of out-thinking us and potentially taking on such uniquely-human traits as empathy, ethical reasoning, perhaps even consciousness.  This will have profound implications for virtually every human activity, as well as the meaning we impart to life and creation themselves.  This conference will provide an introduction for non-specialists to Artificial Intelligence (AI):

What is it?  What can it do and be used for?  And what will be its implications for choice and free will; economics and worklife; surveillance economies and surveillance states; the changing nature of facts and truth; and the comparative intelligence and capabilities of humans and machines in the future? 

Leading practitioners, ethicists and theologians will provide cross-disciplinary and cross-denominational perspectives on such challenges as technology addiction, inherent biases and resulting inequalities, the ethics of creating destructive technologies and of turning decision-making over to machines from self-driving cars to “autonomous weapons” systems in warfare, and how we should treat the suffering of “feeling” machines.  The conference ultimately will address how we think about our place in the universe and what this means for both religious thought and theological institutions themselves.

UTS [Union Theological Seminary] is the oldest independent seminary in the United States and has long been known as a bastion of progressive Christian scholarship.  JTS [Jewish Theological Seminary] is one of the academic and spiritual centers of Conservative Judaism and a major center for academic scholarship in Jewish studies. The Riverside Church is an interdenominational, interracial, international, open, welcoming, and affirming church and congregation that has served as a focal point of global and national activism for peace and social justice since its inception and continues to serve God through word and public witness. The annual Greater Good Gathering, the following week at Columbia University’s School of International & Public Affairs, focuses on how technology is changing society, politics and the economy – part of a growing nationwide effort to advance conversations promoting the “greater good.”

They have embedded a video of the event (it runs a little over seven hours) on the January 30, 2020 Artificial Intelligence: Implications for Ethics and Religion event page. For anyone who finds that a daunting amount of information, you may want to check out the speaker list for ideas about who might be writing and thinking on this topic.

As for Islam, I did track down this November 29, 2018 article by Shahino Mah Abdullah, a fellow at the Institute of Advanced Islamic Studies (IAIS) Malaysia,

As the global community continues to work together on the ethics of AI, there are still vast opportunities to offer ethical inputs, including the ethical principles based on Islamic teachings.

This is in line with Islam’s encouragement for its believers to convey beneficial messages, including to share its ethical principles with society.

In Islam, ethics or akhlak (virtuous character traits) in Arabic, is sometimes employed interchangeably in the Arabic language with adab, which means the manner, attitude, behaviour, and etiquette of putting things in their proper places. Islamic ethics cover all the legal concepts ranging from syariah (Islamic law), fiqh ( jurisprudence), qanun (ordinance), and ‘urf (customary practices).

Adopting and applying moral values based on the Islamic ethical concept or applied Islamic ethics could be a way to address various issues in today’s societies.

At the same time, this approach is in line with the higher objectives of syariah (maqasid alsyariah) that is aimed at conserving human benefit by the protection of human values, including faith (hifz al-din), life (hifz alnafs), lineage (hifz al-nasl), intellect (hifz al-‘aql), and property (hifz al-mal). This approach could be very helpful to address contemporary issues, including those related to the rise of AI and intelligent robots.

..

Part of the difficulty with tracking down more about AI, ethics, and various religions is linguistic. I simply don’t have the language skills to search for the commentaries and, even in English, I may not have the best or most appropriate search terms.

Television (TV) episodes stored on DNA?

According to a Sept. 1, 2020 news item on Nanowerk, the first episode of a tv series, ‘Biohackers’ has been stored on synthetic DNA (deoxyribonucleic acid) by a researcher at TUM and colleagues at another institution,

The first episode of the newly released series “Biohackers” was stored in the form of synthetic DNA. This was made possible by the research of Prof. Reinhard Heckel of the Technical University of Munich (TUM) and his colleague Prof. Robert Grass of ETH Zürich.

They have developed a method that permits the stable storage of large quantities of data on DNA for over 1000 years.

A Sept. 1, 2020 TUM press release, which originated the news item, proceeds with more detail in an interview format,

Prof. Heckel, Biohackers is about a medical student seeking revenge on a professor with a dark past – and the manipulation of DNA with biotechnology tools. You were commissioned to store the series on DNA. How does that work?

First, I should mention that what we’re talking about is artificially generated – in other words, synthetic – DNA. DNA consists of four building blocks: the nucleotides adenine (A), thymine (T), guanine (G) and cytosine (C). Computer data, meanwhile, are coded as zeros and ones. The first episode of Biohackers consists of a sequence of around 600 million zeros and ones. To code the sequence 01 01 11 00 in DNA, for example, we decide which number combinations will correspond to which letters. For example: 00 is A, 01 is C, 10 is G and 11 is T. Our example then produces the DNA sequence CCTA. Using this principle of DNA data storage, we have stored the first episode of the series on DNA.

And to view the series – is it just a matter of “reverse translation” of the letters?

In a very simplified sense, you can visualize it like that. When writing, storing and reading the DNA, however, errors occur. If these errors are not corrected, the data stored on the DNA will be lost. To solve the problem, I have developed an algorithm based on channel coding. This method involves correcting errors that take place during information transfers. The underlying idea is to add redundancy to the data. Think of language: When we read or hear a word with missing or incorrect letters, the computing power of our brain is still capable of understanding the word. The algorithm follows the same principle: It encodes the data with sufficient redundancy to ensure that even highly inaccurate data can be restored later.

Channel coding is used in many fields, including in telecommunications. What challenges did you face when developing your solution?

The first challenge was to create an algorithm specifically geared to the errors that occur in DNA. The second one was to make the algorithm so efficient that the largest possible quantities of data can be stored on the smallest possible quantity of DNA, so that only the absolutely necessary amount of redundancy is added. We demonstrated that our algorithm is optimized in that sense.

DNA data storage is very expensive because of the complexity of DNA production as well as the reading process. What makes DNA an attractive storage medium despite these challenges?

First, DNA has a very high information density. This permits the storage of enormous data volumes in a minimal space. In the case of the TV series, we stored “only” 100 megabytes on a picogram – or a billionth of a gram of DNA. Theoretically, however, it would be possible to store up to 200 exabytes on one gram of DNA. And DNA lasts a long time. By comparison: If you never turned on your PC or wrote data to the hard disk it contains, the data would disappear after a couple of years. By contrast, DNA can remain stable for many thousands of years if it is packed right.

And the method you have developed also makes the DNA strands durable – practically indestructible.

My colleague Robert Grass was the first to develop a process for the “stable packing” of DNA strands by encapsulating them in nanometer-scale spheres made of silica glass. This ensures that the DNA is protected against mechanical influences. In a joint paper in 2015, we presented the first robust DNA data storage concept with our algorithm and the encapsulation process developed by Prof. Grass. Since then we have continuously improved our method. In our most recent publication in Nature Protocols of January 2020, we passed on what we have learned.

What are your next steps? Does data storage on DNA have a future?

We’re working on a way to make DNA data storage cheaper and faster. “Biohackers” was a milestone en route to commercialization. But we still have a long way to go. If this technology proves successful, big things will be possible. Entire libraries, all movies, photos, music and knowledge of every kind – provided it can be represented in the form of data – could be stored on DNA and would thus be available to humanity for eternity.

Here’s a link to and a citation for the paper,

Reading and writing digital data in DNA by Linda C. Meiser, Philipp L. Antkowiak, Julian Koch, Weida D. Chen, A. Xavier Kohll, Wendelin J. Stark, Reinhard Heckel & Robert N. Grass. Nature Protocols volume 15, pages86–101(2020) Issue Date: January 2020 DOI: https://doi.org/10.1038/s41596-019-0244-5 Published [online] 29 November 2019

This paper is behind a paywall.

As for ‘Biohackers’, it’s a German science fiction television series and you can find out more about it here on the Internet Movie Database.

Congratulations to winners of 2020 Nobel Prize for Chemistry: Dr. Emmanuelle Charpentier & Dr. Jennifer A. Doudna (CRISPR-cas9)

It’s possible there’s a more dramatic development in the field of contemporary gene-editing but it’s indisputable that CRISPR (clustered regularly interspaced short palindromic repeats) -cas9 (CRISPR-associated 9 [protein]) ranks very highly indeed.

The technique, first discovered (or developed) in 2012, has brought recognition in the form of the 2020 Nobel Prize for Chemistry to CRISPR’s two discoverers, Emanuelle Charpentier and Jennifer Doudna.

An October 7, 2020 news item on phys.org announces the news,

The Nobel Prize in chemistry went to two researchers Wednesday [October 7, 2020] for a gene-editing tool that has revolutionized science by providing a way to alter DNA, the code of life—technology already being used to try to cure a host of diseases and raise better crops and livestock.

Emmanuelle Charpentier of France and Jennifer A. Doudna of the United States won for developing CRISPR-cas9, a very simple technique for cutting a gene at a specific spot, allowing scientists to operate on flaws that are the root cause of many diseases.

“There is enormous power in this genetic tool,” said Claes Gustafsson, chair of the Nobel Committee for Chemistry.

More than 100 clinical trials are underway to study using CRISPR to treat diseases, and “many are very promising,” according to Victor Dzau, president of the [US] National Academy of Medicine.

“My greatest hope is that it’s used for good, to uncover new mysteries in biology and to benefit humankind,” said Doudna, who is affiliated with the University of California, Berkeley, and is paid by the Howard Hughes Medical Institute, which also supports The Associated Press’ Health and Science Department.

The prize-winning work has opened the door to some thorny ethical issues: When editing is done after birth, the alterations are confined to that person. Scientists fear CRISPR will be misused to make “designer babies” by altering eggs, embryos or sperm—changes that can be passed on to future generations.

Unusually for phys.org, this October 7, 2020 news item is not a simple press/news release reproduced in its entirety but a good overview of the researchers’ accomplishments and a discussion of some of the issues associated with CRISPR along with the press release at the end.

I have covered some CRISPR issues here including intellectual property (see my March 15, 2017 posting titled, “CRISPR patent decision: Harvard’s and MIT’s Broad Institute victorious—for now‘) and designer babies (as exemplified by the situation with Dr. He Jiankui; see my July 28, 2020 post titled, “July 2020 update on Dr. He Jiankui (the CRISPR twins) situation” for more details about it).

An October 7, 2020 article by Michael Grothaus for Fast Company provides a business perspective (Note: A link has been removed),

Needless to say, research by the two scientists awarded the Nobel Prize in Chemistry today has the potential to change the course of humanity. And with that potential comes lots of VC money and companies vying for patents on techniques and therapies derived from Charpentier’s and Doudna’s research.

One such company is Doudna’s Editas Medicine [according to my search, the only company associated with Doudna is Mammoth Biosciences, which she co-founded], while others include Caribou Biosciences, Intellia Therapeutics, and Casebia Therapeutics. Given the world-changing applications—and the amount of revenue such CRISPR therapies could bring in—it’s no wonder that such rivalry is often heated (and in some cases has led to lawsuits over the technology and its patents).

As Doudna explained in her book, A Crack in Creation: Gene Editing and the Unthinkable Power to Control Evolution, cowritten by Samuel H. Sternberg …, “… —but we could also have woolly mammoths, winged lizards, and unicorns.” And as for that last part, she made clear, “No, I am not kidding.”

Everybody makes mistakes and the reference to Editas Medicine is the only error I spotted. You can find out more about Mammoth Biosciences here and while Dr. Doudna’s comment, “My greatest hope is that it’s used for good, to uncover new mysteries in biology and to benefit humankind,” is laudable it would seem she wishes to profit from the discovery. Mammoth Biosciences is a for-profit company as can be seen at the end of the Mammoth Biosciences’ October 7, 2020 congratulatory news release,

About Mammoth Biosciences

Mammoth Biosciences is harnessing the diversity of nature to power the next-generation of CRISPR products. Through the discovery and development of novel CRISPR systems, the company is enabling the full potential of its platform to read and write the code of life. By leveraging its internal research and development and exclusive licensing to patents related to Cas12, Cas13, Cas14 and Casɸ, Mammoth Biosciences can provide enhanced diagnostics and genome editing for life science research, healthcare, agriculture, biodefense and more. Based in San Francisco, Mammoth Biosciences is co-founded by CRISPR pioneer Jennifer Doudna and Trevor Martin, Janice Chen, and Lucas Harrington. The firm is backed by top institutional investors [emphasis mine] including Decheng, Mayfield, NFX, and 8VC, and leading individual investors including Brook Byers, Tim Cook, and Jeff Huber.

An October 7, 2029 Nobel Prize press release, which unleashed all this interest in Doudna and Charpentier, notes this,

Prize amount: 10 million Swedish kronor, to be shared equally between the Laureates.

In Canadian money that amount is $1,492,115.03 (as of Oct. 9, 2020 12:40 PDT when I checked a currency converter).

Ordinarily there’d be a mildly caustic comment from me about business opportunities and medical research but this is a time for congratulations to both Dr. Emanuelle Charpentier and Dr. Jennifer Doudna.

Concerns about Zoom? Call for expressions of interest in “Zoom Obscura,” creative interventions for a data ethics of video conferencing

Have you wondered about Zoom video conferencing and all that data being made available? Perhaps questioned ethical issues in addition to those associated with data security? Is so and you’d like to come up with a creative intervention that delves beyond encryption issues, there’s Zoom Obscura (on the creativeinformatics.org website),

CI [Creative Informatics] researchers Pip Thornton, Chris Elsden and Chris Speed were recently awarded funding from the Human Data Interaction Network (HDI +) Ethics & Data competition. Collaborating with researchers from Durham [Durham University] and KCL [Kings College London], the Zoom Obscura project aims to investigate creative interventions for a data ethics of video conferencing beyond encryption.

The COVID-19 pandemic has gifted video conferencing companies, such as Zoom, with a vast amount of economically valuable and sensitive data such as our facial and voice biometrics, backgrounds and chat scripts. Before the pandemic, this ‘new normal’ would be subject to scrutiny, scepticism and critique. Yet, the urgent need for remote working and socialising left us with little choice but to engage with these potentially exploitative platforms.

While much of the narrative around data security revolves around technological ‘solutions’ such as encryption, we think there are other – more creative – ways to push back against the systems of digital capitalism that continue to encroach on our everyday lives.

As part of this HDI-funded project, we seek artists, hackers and creative technologists who are interested in experimenting with creative methods to join us in a series of online workshops that will explore how to restore some control and agency in how we can be seen and heard in these newly ubiquitous online spaces. Through three half-day workshops held remotely, we will bring artists and technicians together to ideate, prototype, and exhibit various interventions into the rapidly normalising culture of video-calling in ways that do not compromise our privacy and limit the sharing of our data. We invite interventions that begin at any stage of the video-calling process – from analogue obfuscation, to software manipulation or camera trickery.

Selected artists/collectives will receive a £1000 commission to take part and contribute in three workshops, in order to design and produce one or more, individual or collaborative, creative interventions developed from the workshops. These will include both technical support from a creative technologist as well as a curator for dissemination both online and in Edinburgh and London.

If you are an artist / technologist interested in disrupting/subverting the pandemic-inspired digital status quo, please send expressions of interest of no more than 500 words to pip.thornton@ed.ac.uk , andrew.dwyer@bristol.ac.uk, celsden@ed.ac.uk and michael.duggan@kcl.ac.uk by 8th October 2020. We don’t expect fully formed projects (these will come in the workshop sessions), but please indicate any broad ideas and thoughts you have, and highlight how your past and present practice might be a good fit for the project and its aims.

The Zoom Obscura project is in collaboration with Tinderbox Lab in Edinburgh and Hannah Redler-Hawes (independent curator and codirector of the Data as Culture art programme at the Open Data Institute in London). Outputs from the project will be hosted and exhibited via the Data as Culture archive site and at a Creative Informatics event at the University of Edinburgh.

Are folks outside the UK eligible?

I asked Dr. Pip Thornton about eligibility and she kindly noted this in her Sept. 25, 2020 tweet (reply copied from my Twitter feed),

Open to all, but workshop timings may be more amenable to UK working hours. Having said that, we won’t know what the critical mass is until we review all the applications, so please do apply if you’re interested!

Who are the members of the Zoom Obscura project team?

From the Zoom Obscura webpage (on the creativeinformatics.org website),

Dr. Pip Thornton is a post-doctoral research associate in Creative Informatics at the University of Edinburgh, having recently gained her PhD in Geopolitics and Cybersecurity from Royal Holloway, University of London. Her thesis, Language in the Age of Algorithmic Reproduction: A Critique of Linguistic Capitalism, included theoretical, political and artistic critiques of Google’s search and advertising platforms. She has presented in a variety of venues including the Science Museum, the Alan Turing Institute and transmediale. Her work has featured in WIRED UK and New Scientist, and a collection from her {poem}.py intervention has been displayed at Open Data Institute in London. Her Edinburgh Futures Institute (EFI) funded installation Newspeak 2019, shown at the Edinburgh Festival Fringe (2019), was recently awarded an honourable mention in the Surveillance Studies Network biennial art competition (2020) and is shortlisted for the 2020 Lumen Prize for art and technology in the AI category.

Dr. Andrew Dwyer is a research associate  in the University of Bristol’s Cyber Security Group. Andrew gained a DPhil in Cyber Security at the University of Oxford, where he studied and questioned the role of malware – commonly known as computational viruses and worms –  through its analysis, detection, and translation into international politics and its intersection with multiple ecologies. In his doctoral thesis – Malware Ecologies: A Politics of Cybersecurity – he argued for a re-evaluation of the role of computational actors in the production and negotiation of security, and what this means for human-centred notions of weapons and warfare. Previously, Andrew has been a visiting fellow at the German ‘Dynamics of Security’ collaborative research centre based between Philipps-Universität Marburg, Justus-Liebig-Universität Gießen and the Herder Institute, Marburg and is a Research Affiliate at the Centre for Technology and Global Affairs at the University of Oxford. He will soon be starting a 3-year Addison Wheeler research fellowship in the Department of Geography at the Durham University

Dr Chris Elsden is a research associate in Design Informatics at the University of Edinburgh. Chris is primarily working on the AHRC Creative Informatics project., with specific interests in FinTech and livestreaming within the Creative Industries. He is an HCI researcher, with a background in sociology, and expertise in the human experience of a data-driven life. Using and developing innovative design research methods, his work undertakes diverse, qualitative and often speculative engagements with participants to investigate emerging relationships with technology – particularly data-driven tools and financialn technologies. Chris gained his PhD in Computer Science at Open Lab, Newcastle University in 2018, and in 2019 was a recipient of a SIGCHI Outstanding Dissertation Award.

Dr Mike Duggan is a Teaching Fellow in Digital Cultures in the Department of Digital Humanities at Kings College London. He was awarded a PhD in Cultural Geography from Royal Holloway University of London in 2017, which examined everyday digital mapping practices. This project was co-funded by the Ordnance Survey and the EPSRC. He is a member of the Living Maps network, where he is an editor for the ‘navigations’ section and previously curated the seminar series. Mike’s research is broadly interested in the digital and cultural geographies that emerge from the intersections between everyday life and digital technology.

Professor Chris Speed is Chair of Design Informatics at the University of Edinburgh where his research focuses upon the Network Society, Digital Art and Technology, and The Internet of Things. Chris has sustained a critical enquiry into how network technology can engage with the fields of art, design and social experience through a variety of international digital art exhibitions, funded research projects, books journals and conferences. At present Chris is working on funded projects that engage with the social opportunities of crypto-currencies, an internet of toilet roll holders, and a persistent argument that chickens are actually robots.  Chris is co-editor of the journal Ubiquity and co-directs the Design Informatics Research Centre that is home to a combination of researchers working across the fields of interaction design, temporal design, anthropology, software engineering and digital architecture, as well as the PhD, MA/MFA and MSc and Advanced MSc programmes.

David Chatting is a designer and technologist who works in software and hardware to explore the impact of emerging technologies in everyday lives. He is currently a PhD student in the Department of Design at Goldsmiths – University of London, a Visiting Researcher at Newcastle University’s Open Lab and has his own design practice. Previously he was a Senior Researcher at BTs Broadband Applications Research Centre. David has a Masters degree in Design Interactions from the Royal College of Art (2012) and a Bachelors degree in Computer Science from the University of Birmingham (2000). He has published papers and filed patents in the fields of HCI, psychology, tangible interfaces, computer vision and computer graphics.

Hannah Redler Hawes (Data as Culture) is an independent curator and codirector of the Data as Culture art programme at the Open Data Institute in London. Hannah specialises in emerging artistic practice within the fields of art and science and technology, with an interest in participatory process. She has previously developed projects for museums, galleries, corporate contexts, digital space and the public realm including the  Institute of Physics, Tate Modern, The Lowry, Natural History Museum, FACT Liverpool, the Digital Catapult and Science Gallery London, and has provided specialist consultancy services to the Wellcome Collection, Discover South Kensington and the Horniman Museum. Hannah enjoys projects that redraw boundaries between different disciplines. Current research is around addiction, open data, networked culture and new forms of programming beyond the gallery.

Tinderbox Collective : From grass-roots youth work to award-winning music productions, Tinderbox is building a vibrant and eclectic community of young musicians and artists in Scotland. We have a number of programmes that cross over with each other and come together wherever possible.  They are open to children and young people aged 10 – 25, from complete beginners to young professionals and all levels in between. Tinderbox Lab is our digital arts programme and shared studio maker-space in Edinburgh that brings together artists across disciplines with an interest in digital media and interactive technologies. It is a new programme that started development in 2019, leading to projects and events such as Room to Play, a 10-week course for emerging artists led by Yann Seznec; various guest artist talks & workshops; digital arts exhibitions at the V&A Dundee & Edinburgh Festival of Sound; digital/electronics workshops design/development for children & young people; and research included as part of Electronic Visualisation and the Arts (EVA) London 2019 conference.

Jack Nissan (Tinderbox) is the founder and director of the Tinderbox Collective. In 2012/13, Jack took part in a fellowship programmed called International Creative Entrepreneurs and spent several months working with community activists and social enterprises in China, primarily with families and communities on the outskirts of Beijing with an organisation called Hua Dan. Following this, he set up a number of international exchanges and cross-cultural productions that formed the basis for Tinderbox’s Journey of a Thousand Wings programme, a project bringing together artists and community projects from different countries. He is also a co-director and founding member of Hidden Door, a volunteer-run multi-arts festival, and has won a number of awards for his work across creative and social enterprise sectors. He has been invited to take part in several steering committees and advisory roles, including for Creative Scotland’s new cross-cutting theme on Creative Learning and Artworks Scotland’s peer-networks for artists working in participatory settings. Previously, Jack worked as a researcher in psychology and ageing for the multidisciplinary MRC Centre for Cognitive Ageing and Cognitive Epidemiology, specialising in areas of neuropsychology and memory.

Luci Holland (Tinderbox) is a Scottish (Edinburgh-based) composer, sound artist and radio presenter who composes and produces music and audiovisual art for film, games and concert. As a games music composer Luci wrote the original dynamic/responsive music for Blazing Griffin‘s 2018 release Murderous Pursuits, and has composed and arranged for numerous video game music collaborations, such as orchestrating and producing an arrangement of Jessica Curry‘s Disappearing with label Materia Collective’s bespoke cover album Pattern: An Homage to Everybody’s Gone to the Rapture. Currently she has also been composing custom game music tracks for Skyrim mod Lordbound and a variety of other film and game music projects. Luci also builds and designs interactive sonic art installations for festivals and venues (Refraction (Cryptic), CITADEL (Hidden Door)); and in 2019 Luci joined new classical music station Scala Radio to present The Console, a weekly one-hour show dedicated to celebrating great music in games. Luci also works as a musical director and composer with the youth music charity Tinderbox Project on their Orchestra & Digital Arts programmes; classical music organisation Absolute Classics; and occasionally coordinates musical experiments and productions with her music-for-media band Mantra Sound.

Good luck to all who submit an expression of interest and good luck to Dr. Thornton (I see from her bio that she’s been shortlisted for the 2020 Lumen Prize).

Turning brain-controlled wireless electronic prostheses into reality plus some ethical points

Researchers at Stanford University (California, US) believe they have a solution for a problem with neuroprosthetics (Note: I have included brief comments about neuroprosthetics and possible ethical issues at the end of this posting) according an August 5, 2020 news item on ScienceDaily,

The current generation of neural implants record enormous amounts of neural activity, then transmit these brain signals through wires to a computer. But, so far, when researchers have tried to create wireless brain-computer interfaces to do this, it took so much power to transmit the data that the implants generated too much heat to be safe for the patient. A new study suggests how to solve his problem — and thus cut the wires.

Caption: Photo of a current neural implant, that uses wires to transmit information and receive power. New research suggests how to one day cut the wires. Credit: Sergey Stavisky

An August 3, 2020 Stanford University news release (also on EurekAlert but published August 4, 2020) by Tom Abate, which originated the news item, details the problem and the proposed solution,

Stanford researchers have been working for years to advance a technology that could one day help people with paralysis regain use of their limbs, and enable amputees to use their thoughts to control prostheses and interact with computers.

The team has been focusing on improving a brain-computer interface, a device implanted beneath the skull on the surface of a patient’s brain. This implant connects the human nervous system to an electronic device that might, for instance, help restore some motor control to a person with a spinal cord injury, or someone with a neurological condition like amyotrophic lateral sclerosis, also called Lou Gehrig’s disease.

The current generation of these devices record enormous amounts of neural activity, then transmit these brain signals through wires to a computer. But when researchers have tried to create wireless brain-computer interfaces to do this, it took so much power to transmit the data that the devices would generate too much heat to be safe for the patient.

Now, a team led by electrical engineers and neuroscientists Krishna Shenoy, PhD, and Boris Murmann, PhD, and neurosurgeon and neuroscientist Jaimie Henderson, MD, have shown how it would be possible to create a wireless device, capable of gathering and transmitting accurate neural signals, but using a tenth of the power required by current wire-enabled systems. These wireless devices would look more natural than the wired models and give patients freer range of motion.

Graduate student Nir Even-Chen and postdoctoral fellow Dante Muratore, PhD, describe the team’s approach in a Nature Biomedical Engineering paper.

The team’s neuroscientists identified the specific neural signals needed to control a prosthetic device, such as a robotic arm or a computer cursor. The team’s electrical engineers then designed the circuitry that would enable a future, wireless brain-computer interface to process and transmit these these carefully identified and isolated signals, using less power and thus making it safe to implant the device on the surface of the brain.

To test their idea, the researchers collected neuronal data from three nonhuman primates and one human participant in a (BrainGate) clinical trial.

As the subjects performed movement tasks, such as positioning a cursor on a computer screen, the researchers took measurements. The findings validated their hypothesis that a wireless interface could accurately control an individual’s motion by recording a subset of action-specific brain signals, rather than acting like the wired device and collecting brain signals in bulk.

The next step will be to build an implant based on this new approach and proceed through a series of tests toward the ultimate goal.

Here’s a link to and a citation for the paper,

Power-saving design opportunities for wireless intracortical brain–computer interfaces by Nir Even-Chen, Dante G. Muratore, Sergey D. Stavisky, Leigh R. Hochberg, Jaimie M. Henderson, Boris Murmann & Krishna V. Shenoy. Nature Biomedical Engineering (2020) DOI: https://doi.org/10.1038/s41551-020-0595-9 Published: 03 August 2020

This paper is behind a paywall.

Comments about ethical issues

As I found out while investigating, ethical issues in this area abound. My first thought was to look at how someone with a focus on ability studies might view the complexities.

My ‘go to’ resource for human enhancement and ethical issues is Gregor Wolbring, an associate professor at the University of Calgary (Alberta, Canada). his profile lists these areas of interest: ability studies, disability studies, governance of emerging and existing sciences and technologies (e.g. neuromorphic engineering, genetics, synthetic biology, robotics, artificial intelligence, automatization, brain machine interfaces, sensors) and more.

I can’t find anything more recent on this particular topic but I did find an August 10, 2017 essay for The Conversation where he comments on technology and human enhancement ethical issues where the technology is gene-editing. Regardless, he makes points that are applicable to brain-computer interfaces (human enhancement), Note: Links have been removed),

Ability expectations have been and still are used to disable, or disempower, many people, not only people seen as impaired. They’ve been used to disable or marginalize women (men making the argument that rationality is an important ability and women don’t have it). They also have been used to disable and disempower certain ethnic groups (one ethnic group argues they’re smarter than another ethnic group) and others.

A recent Pew Research survey on human enhancement revealed that an increase in the ability to be productive at work was seen as a positive. What does such ability expectation mean for the “us” in an era of scientific advancements in gene-editing, human enhancement and robotics?

Which abilities are seen as more important than others?

The ability expectations among “us” will determine how gene-editing and other scientific advances will be used.

And so how we govern ability expectations, and who influences that governance, will shape the future. Therefore, it’s essential that ability governance and ability literacy play a major role in shaping all advancements in science and technology.

One of the reasons I find Gregor’s commentary so valuable is that he writes lucidly about ability and disability as concepts and poses what can be provocative questions about expectations and what it is to be truly abled or disabled. You can find more of his writing here on his eponymous (more or less) blog.

Ethics of clinical trials for testing brain implants

This October 31, 2017 article by Emily Underwood for Science was revelatory,

In 2003, neurologist Helen Mayberg of Emory University in Atlanta began to test a bold, experimental treatment for people with severe depression, which involved implanting metal electrodes deep in the brain in a region called area 25 [emphases mine]. The initial data were promising; eventually, they convinced a device company, St. Jude Medical in Saint Paul, to sponsor a 200-person clinical trial dubbed BROADEN.

This month [October 2017], however, Lancet Psychiatry reported the first published data on the trial’s failure. The study stopped recruiting participants in 2012, after a 6-month study in 90 people failed to show statistically significant improvements between those receiving active stimulation and a control group, in which the device was implanted but switched off.

… a tricky dilemma for companies and research teams involved in deep brain stimulation (DBS) research: If trial participants want to keep their implants [emphases mine], who will take responsibility—and pay—for their ongoing care? And participants in last week’s meeting said it underscores the need for the growing corps of DBS researchers to think long-term about their planned studies.

… participants bear financial responsibility for maintaining the device should they choose to keep it, and for any additional surgeries that might be needed in the future, Mayberg says. “The big issue becomes cost [emphasis mine],” she says. “We transition from having grants and device donations” covering costs, to patients being responsible. And although the participants agreed to those conditions before enrolling in the trial, Mayberg says she considers it a “moral responsibility” to advocate for lower costs for her patients, even it if means “begging for charity payments” from hospitals. And she worries about what will happen to trial participants if she is no longer around to advocate for them. “What happens if I retire, or get hit by a bus?” she asks.

There’s another uncomfortable possibility: that the hypothesis was wrong [emphases mine] to begin with. A large body of evidence from many different labs supports the idea that area 25 is “key to successful antidepressant response,” Mayberg says. But “it may be too simple-minded” to think that zapping a single brain node and its connections can effectively treat a disease as complex as depression, Krakauer [John Krakauer, a neuroscientist at Johns Hopkins University in Baltimore, Maryland] says. Figuring that out will likely require more preclinical research in people—a daunting prospect that raises additional ethical dilemmas, Krakauer says. “The hardest thing about being a clinical researcher,” he says, “is knowing when to jump.”

Brain-computer interfaces, symbiosis, and ethical issues

This was the most recent and most directly applicable work that I could find. From a July 24, 2019 article by Liam Drew for Nature Outlook: The brain,

“It becomes part of you,” Patient 6 said, describing the technology that enabled her, after 45 years of severe epilepsy, to halt her disabling seizures. Electrodes had been implanted on the surface of her brain that would send a signal to a hand-held device when they detected signs of impending epileptic activity. On hearing a warning from the device, Patient 6 knew to take a dose of medication to halt the coming seizure.

“You grow gradually into it and get used to it, so it then becomes a part of every day,” she told Frederic Gilbert, an ethicist who studies brain–computer interfaces (BCIs) at the University of Tasmania in Hobart, Australia. “It became me,” she said. [emphasis mine]

Gilbert was interviewing six people who had participated in the first clinical trial of a predictive BCI to help understand how living with a computer that monitors brain activity directly affects individuals psychologically1. Patient 6’s experience was extreme: Gilbert describes her relationship with her BCI as a “radical symbiosis”.

Symbiosis is a term, borrowed from ecology, that means an intimate co-existence of two species for mutual advantage. As technologists work towards directly connecting the human brain to computers, it is increasingly being used to describe humans’ potential relationship with artificial intelligence.

Interface technologies are divided into those that ‘read’ the brain to record brain activity and decode its meaning, and those that ‘write’ to the brain to manipulate activity in specific regions and affect their function.

Commercial research is opaque, but scientists at social-media platform Facebook are known to be pursuing brain-reading techniques for use in headsets that would convert users’ brain activity into text. And neurotechnology companies such as Kernel in Los Angeles, California, and Neuralink, founded by Elon Musk in San Francisco, California, predict bidirectional coupling in which computers respond to people’s brain activity and insert information into their neural circuitry. [emphasis mine]

Already, it is clear that melding digital technologies with human brains can have provocative effects, not least on people’s agency — their ability to act freely and according to their own choices. Although neuroethicists’ priority is to optimize medical practice, their observations also shape the debate about the development of commercial neurotechnologies.

Neuroethicists began to note the complex nature of the therapy’s side effects. “Some effects that might be described as personality changes are more problematic than others,” says Maslen [Hannah Maslen, a neuroethicist at the University of Oxford, UK]. A crucial question is whether the person who is undergoing stimulation can reflect on how they have changed. Gilbert, for instance, describes a DBS patient who started to gamble compulsively, blowing his family’s savings and seeming not to care. He could only understand how problematic his behaviour was when the stimulation was turned off.

Such cases present serious questions about how the technology might affect a person’s ability to give consent to be treated, or for treatment to continue. [emphases mine] If the person who is undergoing DBS is happy to continue, should a concerned family member or doctor be able to overrule them? If someone other than the patient can terminate treatment against the patient’s wishes, it implies that the technology degrades people’s ability to make decisions for themselves. It suggests that if a person thinks in a certain way only when an electrical current alters their brain activity, then those thoughts do not reflect an authentic self.

To observe a person with tetraplegia bringing a drink to their mouth using a BCI-controlled robotic arm is spectacular. [emphasis mine] This rapidly advancing technology works by implanting an array of electrodes either on or in a person’s motor cortex — a brain region involved in planning and executing movements. The activity of the brain is recorded while the individual engages in cognitive tasks, such as imagining that they are moving their hand, and these recordings are used to command the robotic limb.

If neuroscientists could unambiguously discern a person’s intentions from the chattering electrical activity that they record in the brain, and then see that it matched the robotic arm’s actions, ethical concerns would be minimized. But this is not the case. The neural correlates of psychological phenomena are inexact and poorly understood, which means that signals from the brain are increasingly being processed by artificial intelligence (AI) software before reaching prostheses.[emphasis mine]

But, he [Philipp Kellmeyer, a neurologist and neuroethicist at the University of Freiburg, Germany] says, using AI tools also introduces ethical issues of which regulators have little experience. [emphasis mine] Machine-learning software learns to analyse data by generating algorithms that cannot be predicted and that are difficult, or impossible, to comprehend. This introduces an unknown and perhaps unaccountable process between a person’s thoughts and the technology that is acting on their behalf.

Maslen is already helping to shape BCI-device regulation. She is in discussion with the European Commission about regulations it will implement in 2020 that cover non-invasive brain-modulating devices that are sold straight to consumers. [emphases mine; Note: There is a Canadian company selling this type of product, MUSE] Maslen became interested in the safety of these devices, which were covered by only cursory safety regulations. Although such devices are simple, they pass electrical currents through people’s scalps to modulate brain activity. Maslen found reports of them causing burns, headaches and visual disturbances. She also says clinical studies have shown that, although non-invasive electrical stimulation of the brain can enhance certain cognitive abilities, this can come at the cost of deficits in other aspects of cognition.

Regarding my note about MUSE, the company is InteraXon and its product is MUSE.They advertise the product as “Brain Sensing Headbands That Improve Your Meditation Practice.” The company website and the product seem to be one entity, Choose Muse. The company’s product has been used in some serious research papers they can be found here. I did not see any research papers concerning safety issues.

Getting back to Drew’s July 24, 2019 article and Patient 6,

… He [Gilbert] is now preparing a follow-up report on Patient 6. The company that implanted the device in her brain to help free her from seizures went bankrupt. The device had to be removed.

… Patient 6 cried as she told Gilbert about losing the device. … “I lost myself,” she said.

“It was more than a device,” Gilbert says. “The company owned the existence of this new person.”

I strongly recommend reading Drew’s July 24, 2019 article in its entirety.

Finally

It’s easy to forget that in all the excitement over technologies ‘making our lives better’ that there can be a dark side or two. Some of the points brought forth in the articles by Wolbring, Underwood, and Drew confirmed my uneasiness as reasonable and gave me some specific examples of how these technologies raise new issues or old issues in new ways.

What I find interesting is that no one is using the term ‘cyborg’, which would seem quite applicable.There is an April 20, 2012 posting here titled ‘My mother is a cyborg‘ where I noted that by at lease one definition people with joint replacements, pacemakers, etc. are considered cyborgs. In short, cyborgs or technology integrated into bodies have been amongst us for quite some time.

Interestingly, no one seems to care much when insects are turned into cyborgs (can’t remember who pointed this out) but it is a popular area of research especially for military applications and search and rescue applications.

I’ve sometimes used the term ‘machine/flesh’ and or ‘augmentation’ as a description of technologies integrated with bodies, human or otherwise. You can find lots on the topic here however I’ve tagged or categorized it.

Amongst other pieces you can find here, there’s the August 8, 2016 posting, ‘Technology, athletics, and the ‘new’ human‘ featuring Oscar Pistorius when he was still best known as the ‘blade runner’ and a remarkably successful paralympic athlete. It’s about his efforts to compete against able-bodied athletes at the London Olympic Games in 2012. It is fascinating to read about technology and elite athletes of any kind as they are often the first to try out ‘enhancements’.

Gregor Wolbring has a number of essays on The Conversation looking at Paralympic athletes and their pursuit of enhancements and how all of this is affecting our notions of abilities and disabilities. By extension, one has to assume that ‘abled’ athletes are also affected with the trickle-down effect on the rest of us.

Regardless of where we start the investigation, there is a sameness to the participants in neuroethics discussions with a few experts and commercial interests deciding on how the rest of us (however you define ‘us’ as per Gregor Wolbring’s essay) will live.

This paucity of perspectives is something I was getting at in my COVID-19 editorial for the Canadian Science Policy Centre. My thesis being that we need a range of ideas and insights that cannot be culled from small groups of people who’ve trained and read the same materials or entrepreneurs who too often seem to put profit over thoughtful implementations of new technologies. (See the PDF May 2020 edition [you’ll find me under Policy Development]) or see my May 15, 2020 posting here (with all the sources listed.)

As for this new research at Stanford, it’s exciting news, which raises questions, as it offers the hope of independent movement for people diagnosed as tetraplegic (sometimes known as quadriplegic.)

July 2020 update on Dr. He Jiankui (the CRISPR twins) situation

This was going to be written for January 2020 but sometimes things happen (e.g., a two-part overview of science culture in Canada from 2010-19 morphed into five parts with an addendum and, then, a pandemic). By now (July 28, 2020), Dr. He’s sentencing to three years in jail announced by the Chinese government in January 2020 is old news.

Regardless, it seems a neat and tidy ending to an international scientific scandal concerned with germline-editing which resulted in at least one set of twins, Lulu and Nana. He claimed to have introduced a variant (“Delta 32” variation) of their CCR5 gene. This does occur naturally and scientists have noted that people with this mutation seem to be resistant to HIV and smallpox.

For those not familiar with the events surrounding the announcement, here’s a brief recap. News of the world’s first gene-edited twins’ birth was announced in November 2018 just days before an international meeting group of experts who had agreed on a moratorium in 2015 on exactly that kind of work. The scientist making the announcement about the twins was scheduled for at least one presentation at the meeting, which was to be held in Hong Kong. He did give his presentation but left the meeting shortly afterwards as shock was beginning to abate and fierce criticism was rising. My November 28, 2018 posting (First CRISPR gene-edited babies? Ethics and the science story) offers a timeline of sorts and my initial response.

I subsequently followed up with two mores posts as the story continued to develop. My May 17, 2019 posting (Genes, intelligence, Chinese CRISPR (clustered regularly interspaced short palindromic repeats) babies, and other children) featured news that Dr. He’s gene-editing may have resulted in the twins having improved cognitive skills. Then, more news broke. The title for my June 20, 2019 posting (Greater mortality for the CRISPR twins Lulu and Nana?) is self-explanatory.

I have roughly organized my sources for this posting into two narratives, which I’m contrasting with each other. First, there is one found in the mainstream media (English language), ‘The Popular Narrative’. Second, there is story where Dr. He is viewed more sympathetically and as part of a larger community where there isn’t nearly as much consensus over what should or shouldn’t be done as ‘the popular narrative’ insists.

The popular narrative: Dr. He was a rogue scientist

A December 30, 2019 article for Fast Company by Kristin Toussaint lays out the latest facts (Note: A link has been removed),

… Now, a court in China has sentenced He to three years in prison, according to Xinhua, China’s state-run press agency, for “illegal medical practices.”

The court in China’s southern city of Shenzhen says that He’s team, which included colleagues Zhang Renli and Qin Jinzhou from two medical institutes in Guangdong Province, falsified ethical approval documents and violated China’s “regulations and ethical principles” with their gene-editing work. Zhang was sentenced to two years in jail, and Qin to 18 months with a two-year reprieve, according to Xinhau.

Ian Sample’s December 31, 2020 article for the Guardian offers more detail (Note: Links have been removed),

The court in Shenzhen found He guilty of “illegal medical practices” and in addition to the prison sentence fined him 3m yuan (£327,360), according to the state news agency, Xinhua. Two others on He’s research team received lesser fines and sentences.

“The three accused did not have the proper certification to practise medicine, and in seeking fame and wealth, deliberately violated national regulations in scientific research and medical treatment,” the court said, according to Xinhua. “They’ve crossed the bottom line of ethics in scientific research and medical ethics.”

[…] the court found He had forged documents from an ethics review panel that were used to recruit couples for the research. The couples that enrolled had a man with HIV and a woman without and were offered IVF in return for taking part.

Zhang Renli, who worked with He, was sentenced to two years in prison and fined 1m yuan. Colleague Qin Jinzhou received an 18-month sentence, but with a two-year reprieve, and a 500,000 yuan fine.

He’s experiments, which were carried out on seven embryos in late 2018, sent shockwaves through the medical and scientific world. The work was swiftly condemned for deceiving vulnerable patients and using a risky, untested procedure with no medical justification. Earlier this month, MIT Technology Review released excerpts from an early manuscript of He’s work. It casts serious doubts on his claims to have made the children immune to HIV.

Even as the scientific community turned against He, the scientist defended his work and said he was proud of having created Lulu and Nana. A third child has since been born as a result of the experiments.

Robin Lovell-Badge at the Francis Crick Institute in London said it was “far too premature” for anyone to pursue genome editing on embryos that are intended to lead to pregnancies. “At this stage we do not know if the methods will ever be sufficiently safe and efficient, although the relevant science is progressing rapidly, and new methods can look promising. It is also important to have standards established, including detailed regulatory pathways, and appropriate means of governance.”

A December 30, 2019 article, by Carolyn Y. Johnson for the Washington Post, covers much the same ground although it does go on to suggest that there might be some blame to spread around (Note: Links have been removed),

The Chinese researcher who stunned and alarmed the international scientific community with the announcement that he had created the world’s first gene-edited babies has been sentenced to three years in prison by a court in China.

He Jiankui sparked a bioethical crisis last year when he claimed to have edited the DNA of human embryos, resulting in the birth of twins called Lulu and Nana as well as a possible third pregnancy. The gene editing, which was aimed at making the children immune to HIV, was excoriated by many scientists as a reckless experiment on human subjects that violated basic ethical principles.

The judicial proceedings were not public, and outside experts said it is hard to know what to make of the punishment without the release of the full investigative report or extensive knowledge of Chinese law and the conditions under which He will be incarcerated.

Jennifer Doudna, a biochemist at the University of California at Berkeley who co-invented CRISPR, the gene editing technology that He utilized, has been outspoken in condemning the experiments and has repeatedly said CRISPR is not ready to be used for reproductive purposes.

R. Alta Charo, a fellow at Stanford’s Center for Advanced Study in the Behavioral Sciences, was among a small group of experts who had dinner with He the night before he unveiled his controversial research in Hong Kong in November 2018.

“He Jiankui is an example of somebody who fundamentally didn’t understand, or didn’t want to recognize, what have become international norms around responsible research,” Charo said. “My impression is he allowed his personal ambition to completely cloud rational thinking and judgment.”

Scientists have been testing an array of powerful biotechnology tools to fix genetic diseases in adults. There is tremendous excitement about the possibility of fixing genes that cause serious disease, and the first U.S. patients were treated with CRISPR this year.

But scientists have long drawn a clear moral line between curing genetic diseases in adults and editing and implanting human embryos, which raises the specter of “designer babies.” Those changes and any unanticipated ones could be inherited by future generations — in essence altering the human species.

“The fact that the individual at the center of the story has been punished for his role in it should not distract us from examining what supporting roles were played by others, particularly in the international scientific community and also the environment that shaped and encouraged him to push the limits,” said Benjamin Hurlbut [emphasis mine], associate professor in the School of Life Sciences at Arizona State University.

Stanford University cleared its scientists, including He’s former postdoctoral adviser, Stephen Quake, finding that Quake and others did not participate in the research and had expressed “serious concerns to Dr. He about his work.” A Rice University spokesman said an investigation continues into bioengineering professor Michael Deem, He’s former academic adviser. Deem was listed as a co-author on a paper called “Birth of Twins After Genome Editing for HIV Resistance,” submitted to scientific journals, according to MIT Technology Review.

It’s interesting that it’s only the Chinese scientists who are seen to be punished, symbolically at least. Meanwhile, Stanford clears its scientists of any wrongdoing and Rice University continues to investigate.

Watch for the Hurlbut name (son, Benjamin and father, William) to come up again in the ‘complex narrative’ section.

Criticism of the ‘twins’ CRISPR editing’ research

Antonio Regalado’s December 3, 2020 article for the MIT (Massachusetts Institute of Technology) Technology Review features comments from various experts on an unpublished draft of Dr. He Jiankui’s research

Earlier this year a source sent us a copy of an unpublished manuscript describing the creation of the first gene-edited babies, born last year in China. Today, we are making excerpts of that manuscript public for the first time.

Titled “Birth of Twins After Genome Editing for HIV Resistance,” and 4,699 words long, the still unpublished paper was authored by He Jiankui, the Chinese biophysicist who created the edited twin girls. A second manuscript we also received discusses laboratory research on human and animal embryos.

The metadata in the files we were sent indicate that the two draft papers were edited by He in late November 2018 and appear to be what he initially submitted for publication. Other versions, including a combined manuscript, may also exist. After consideration by at least two prestigious journals, Nature and JAMA, his research remains unpublished.

The text of the twins paper is replete with expansive claims of a medical breakthrough that can “control the HIV epidemic.” It claims “success”—a word used more than once—in using a “novel therapy” to render the girls resistant to HIV. Yet surprisingly, it makes little attempt to prove that the twins really are resistant to the virus. And the text largely ignores data elsewhere in the paper suggesting that the editing went wrong.

We shared the unpublished manuscripts with four experts—a legal scholar, an IVF doctor, an embryologist, and a gene-editing specialist—and asked them for their reactions. Their views were damning. Among them: key claims that He and his team made are not supported by the data; the babies’ parents may have been under pressure to agree to join the experiment; the supposed medical benefits are dubious at best; and the researchers moved forward with creating living human beings before they fully understood the effects of the edits they had made.

1. Why aren’t the doctors among the paper’s authors?

The manuscript begins with a list of the authors—10 of them, mostly from He Jiankui’s lab at the Southern University of Science and Technology, but also including Hua Bai, director of an AIDS support network, who helped recruit couples, and Michael Deem, an American biophysicist whose role is under review by Rice University. (His attorney previously said Deem never agreed to submit the manuscript and sought to remove his name from it.)

It’s a small number of people for such a significant project, and one reason is that some names are missing—notably, the fertility doctors who treated the patients and the obstetrician who delivered the babies. Concealing them may be an attempt to obscure the identities of the patients. However, it also leaves unclear whether or not these doctors understood they were helping to create the first gene-edited babies.

To some, the question of whether the manuscript is trustworthy arises immediately.

Hank Greely, professor of law, Stanford University: We have no, or almost no, independent evidence for anything reported in this paper. Although I believe that the babies probably were DNA-edited and were born, there’s very little evidence for that. Given the circumstances of this case, I am not willing to grant He Jiankui the usual presumption of honesty. 

That last article by Regalado is the purest example I have of how fierce the criticism is and how almost all of it is focused on Dr. He and his Chinese colleagues.

A complex, measured narrative: multiple players in the game

The most sympathetic and, in many ways, the most comprehensive article is an August 1, 2019 piece by Jon Cohen for Science magazine (Note: Links have been removed),

On 10 June 2017, a sunny and hot Saturday in Shenzhen, China, two couples came to the Southern University of Science and Technology (SUSTech) to discuss whether they would participate in a medical experiment that no researcher had ever dared to conduct. The Chinese couples, who were having fertility problems, gathered around a conference table to meet with He Jiankui, a SUSTech biophysicist. Then 33, He (pronounced “HEH”) had a growing reputation in China as a scientist-entrepreneur but was little known outside the country. “We want to tell you some serious things that might be scary,” said He, who was trim from years of playing soccer and wore a gray collared shirt, his cuffs casually unbuttoned.

He simply meant the standard in vitro fertilization (IVF) procedures. But as the discussion progressed, He and his postdoc walked the couples through informed consent forms [emphasis mine] that described what many ethicists and scientists view as a far more frightening proposition. Seventeen months later, the experiment triggered an international controversy, and the worldwide scientific community rejected him. The scandal cost him his university position and the leadership of a biotech company he founded. Commentaries labeled He, who also goes by the nickname JK, a “rogue,” “China’s Frankenstein,” and “stupendously immoral.” [emphases mine]

But that day in the conference room, He’s reputation remained untarnished. As the couples listened and flipped through the forms, occasionally asking questions, two witnesses—one American, the other Chinese—observed [emphasis mine]. Another lab member shot video, which Science has seen [emphasis mine], of part of the 50-minute meeting. He had recruited those couples because the husbands were living with HIV infections kept under control by antiviral drugs. The IVF procedure would use a reliable process called sperm washing to remove the virus before insemination, so father-to-child transmission was not a concern. Rather, He sought couples who had endured HIV-related stigma and discrimination and wanted to spare their children that fate by dramatically reducing their risk of ever becoming infected. [emphasis mine]

He, who for much of his brief career had specialized in sequencing DNA, offered a potential solution: CRISPR, the genome-editing tool that was revolutionizing biology, could alter a gene in IVF embryos to cripple production of an immune cell surface protein, CCR5, that HIV uses to establish an infection. “This technique may be able to produce an IVF baby naturally immunized against AIDS,” one consent form read.[emphasis mine]

The couples’ children could also pass the protective mutation to future generations. The prospect of this irrevocable genetic change is why, since the advent of CRISPR as a genome editor 5 years earlier, the editing of human embryos, eggs, or sperm has been hotly debated. The core issue is whether such germline editing would cross an ethical red line because it could ultimately alter our species. Regulations, some with squishy language, arguably prohibited it in many countries, China included.

Yet opposition was not unanimous. A few months before He met the couples, a committee convened by the U.S. National Academies of Sciences, Engineering, and Medicine (NASEM) concluded in a well-publicized report that human trials of germline editing “might be permitted” if strict criteria were met. The group of scientists, lawyers, bioethicists, and patient advocates spelled out a regulatory framework but cautioned that “these criteria are necessarily vague” because various societies, caregivers, and patients would view them differently. The committee notably did not call for an international ban, arguing instead for governmental regulation as each country deemed appropriate and “voluntary self-regulation pursuant to professional guidelines.”

[…] He hid his plans and deceived his colleagues and superiors, as many people have asserted? A preliminary investigation in China stated that He had forged documents, “dodged supervision,” and misrepresented blood tests—even though no proof of those charges was released [emphasis mine], no outsiders were part of the inquiry, and He has not publicly admitted to any wrongdoing. (CRISPR scientists in China say the He fallout has affected their research.) Many scientists outside China also portrayed He as a rogue actor. “I think there has been a failure of self-regulation by the scientific community because of a lack of transparency,” virologist David Baltimore, a Nobel Prize–winning researcher at the California Institute of Technology (Caltech) in Pasadena and co-chair of the Hong Kong summit, thundered at He after the biophysicist’s only public talk on the experiment.

Because the Chinese government has revealed little and He is not talking, key questions about his actions are hard to answer. Many of his colleagues and confidants also ignored Science‘s requests for interviews. But Ryan Ferrell, a public relations specialist He hired, has cataloged five dozen people who were not part of the study but knew or suspected what He was doing before it became public. Ferrell calls it He’s circle of trust. [emphasis mine]

That circle included leading scientists—among them a Nobel laureate—in China and the United States, business executives, an entrepreneur connected to venture capitalists, authors of the NASEM report, a controversial U.S. IVF specialist [John Zhang] who discussed opening a gene-editing clinic with He [emphasis mine], and at least one Chinese politician. “He had an awful lot of company to be called a ‘rogue,’” says geneticist George Church [emphases mine], a CRISPR pioneer at Harvard University who was not in the circle of trust and is one of the few scientists to defend at least some aspects of He’s experiment.

Some people sharply criticized He when he brought them into the circle; others appear to have welcomed his plans or did nothing. Several went out of their way to distance themselves from He after the furor erupted. For example, the two onlookers in that informed consent meeting were Michael Deem, He’s Ph.D. adviser at Rice University in Houston, Texas, and Yu Jun, a member of the Chinese Academy of Sciences (CAS) and co-founder of the Beijing Genomics Institute, the famed DNA sequencing company in Shenzhen. Deem remains under investigation by Rice for his role in the experiment and would not speak with Science. In a carefully worded statement, Deem’s lawyers later said he “did not meet the parents of the reported CCR5-edited children, or anyone else whose embryos were edited.” But earlier, Deem cooperated with the Associated Press (AP) for its exclusive story revealing the birth of the babies, which reported that Deem was “present in China when potential participants gave their consent and that he ‘absolutely’ thinks they were able to understand the risks. [emphasis mine]”

Yu, who works at CAS’s Beijing Institute of Genomics, acknowledges attending the informed consent meeting with Deem, but he told Science he did not know that He planned to implant gene-edited embryos. “Deem and I were chatting about something else,” says Yu, who has sequenced the genomes of humans, rice, silkworms, and date palms. “What was happening in the room was not my business, and that’s my personality: If it’s not my business, I pay very little attention.”

Some people who know He and have spoken to Science contend it is time for a more open discussion of how the biophysicist formed his circle of confidants and how the larger circle of trust—the one between the scientific community and the public—broke down. Bioethicist William Hurlbut at Stanford University [emphasis mine] in Palo Alto, California, who knew He wanted to conduct the embryo-editing experiment and tried to dissuade him, says that He was “thrown under the bus” by many people who once supported him. “Everyone ran for the exits, in both the U.S. and China. I think everybody would do better if they would just openly admit what they knew and what they did, and then collectively say, ‘Well, people weren’t clear what to do. We should all admit this is an unfamiliar terrain.’”

Steve Lombardi, a former CEO of Helicos, reacted far more charitably. Lombardi, who runs a consulting business in Bridgewater, Connecticut, says Quake introduced him to He to help find investors for Direct Genomics. “He’s your classic, incredibly bright, naïve entrepreneur—I run into them all the time,” Lombardi says. “He had the right instincts for what to do in China and just didn’t know how to do it. So I put him in front of as many people as I could.” Lombardi says He told him about his embryo-editing ambitions in August 2017, asking whether Lombardi could find investors for a new company that focused on “genetic medical tourism” and was based in China or, because of a potentially friendlier regulatory climate, Thailand. “I kept saying to him, ‘You know, you’ve got to deal with the ethics of this and be really sure that you know what you’re doing.’”

In April 2018, He asked Ferrell to handle his media full time. Ferrell was a good fit—he had an undergraduate degree in neuroscience, had spent a year in Beijing studying Chinese, and had helped another company using a pre-CRISPR genome editor. Now that a woman in the trial was pregnant, Ferrell says, He’s “understanding of the gravity of what he had done increased.” Ferrell had misgivings about the experiment, but he quit HDMZ and that August moved to Shenzhen. With the pregnancy already underway, Ferrell reasoned, “It was going to be the biggest science story of that week or longer, no matter what I did.”

MIT Technology Review had broken a story early that morning China time, saying human embryos were being edited and implanted, after reporter Antonio Regalado discovered descriptions of the project that He had posted online, without Ferrell’s knowledge, in an official Chinese clinical trial registry. Now, He gave AP the green light to post a detailed account, which revealed that twin girls—whom He, to protect their identifies, named Lulu and Nana—had been born. Ferrell and He also posted five unfinished YouTube videos explaining and justifying the unprecedented experiment.

“He was fearful that he’d be unable to communicate to the press and the onslaught in a way that would be in any way manageable for him,” Ferrell says. One video tried to forestall eugenics accusations, with He rejecting goals such as enhancing intelligence, changing skin color, and increasing sports performance as “not love.” Still, the group knew it had lost control of the news. [emphasis mine]

… On 7 March 2017, 5 weeks after the California gathering, He submitted a medical ethics approval application to the Shenzhen HarMoniCare Women and Children’s Hospital that outlined the planned CCR5 edit of human embryos. The babies, it claimed, would be resistant to HIV as well as to smallpox and cholera. (The natural CCR5 mutation may have been selected for because it helps carriers survive smallpox and plague, some studies suggest—but they don’t mention cholera.) “This is going to be a great science and medicine achievement ever since the IVF technology which was awarded the Nobel Prize in 2010, and will also bring hope to numerous genetic disease patients,” the application says. Seven people on the ethics committee, chaired by Lin Zhitong—a one-time Direct Genomics director and a HarMoniCare administrator—signed the application, indicating they approved it.

[…] John Zhang, […] [emphasis mine] earned his medical degree in China and a Ph.D. in reproductive biology at the University of Cambridge in the United Kingdom. Zhang had made international headlines himself in September 2016, when New Scientist revealed that he had created the world’s first “three-parent baby” by using mitochondrial DNA from a donor egg to revitalize the egg of a woman with infertility and then inseminating the resulting egg. “This technology holds great hope for ladies with advanced maternal age to have their own children with their own eggs,” Zhang explains in the center’s promotional video, which alternates between Chinese and English. It does not mention that Zhang did the IVF experiment in Mexico because it is not now allowed in the United States. [emphasis mine]

When Science contacted Zhang, the physician initially said he barely knew He: [emphases mine] “I know him just like many people know him, in an academic meeting.”

After his talk [November 2018 at Hong Kong meeting], He immediately drove back to Shenzhen, and his circle of trust began to disintegrate. He has not spoken publicly since. “I don’t think he can recover himself through PR,” says Ferrell, who no longer works for He but recently started to do part-time work for He’s wife. “He has to do other service to the world.”

Calls for a moratorium on human germline editing have increased, although at the end of the Hong Kong summit, the organizing committee declined in its consensus to call for a ban. China has stiffened its regulations on work with human embryos, and Chinese bioethicists in a Nature editorial about the incident urged the country to confront “the eugenic thinking that has persisted among a small proportion of Chinese scholars.”

Church, who has many CRISPR collaborations in China, finds it inconceivable that He’s work surprised the Chinese government. China has “the best surveillance system in the world,” he says. “I conclude that they were totally aware of what he was doing at every step of the way, especially because he wasn’t particularly secretive about it.”

Benjamin Hurlbut, William’s son and a historian of biomedicine at Arizona State University in Tempe, says leaders in the scientific community should take a hard look at their actions, too. [emphases mine] He thinks the 2017 NASEM report helped give rise to He by following a well-established approach to guiding science: appointing an elite group to decide how scientists should be regulated. Benjamin Hurlbut, whose book Experiments in Democracy explores the governance of embryo research and bioethics, questions why small, scientist-led groups—à la the totemic Asilomar conference held in 1975 to discuss the future of recombinant DNA research—are seen as the best way to shape thinking about new technologies. Hurlbut has called for a “global observatory for gene editing” to convene meetings with diverse perspectives.

The prevailing notion that the scientific community simply “failed to see the rogue among the responsible,” Hurlbut says, is a convenient narrative for those scientific leaders and inhibits their ability to learn from such failures. [emphases mine] “It puts them on the right side of history,” he says. They failed to paint a bright enough red line, Hurlbut contends. “They are not on the right side of history because they contributed to this.”

If you have the time, I strongly recommend reading Cohen’s piece in its entirety. You’ll find links to the reports and more articles with in-depth reporting on this topic.

A little kindness and no regrets

William Hurlbut was interviewed in an As it happens (Canadian Broadcasting Corporation’ CBC) radio programme segment on December 30, 2020. This is an excerpt from the story transcript written by Sheena Goodyear (Note: A link has been removed),

Dr. William Hurlbut, a physician and professor of neural-biology at Stanford University, says he tried to warn He to slow down before it was too late. Here is part of his conversation with As It Happens guest host Helen Mann.

What was your reaction to the news that Dr. He had been sentenced to three years in prison?

My first reaction was one of sadness because I know Dr. He — who we call J.K., that’s his nickname.

I spent quite a few hours talking with him, and I’m just sad that this worked out this way. It didn’t work out well for him or for his country or for the world, in some sense.

Except the one good thing is it’s alerted us, it’s awakened the world, to the seriousness of the issues that are coming down toward us with biotechnology, especially in genetics.

How does he feel about [how] not just the Chinese government, but the world generally, responded to his experiment?

He was surprised, personally. But I had actually warned him that he was proceeding too fast, and I didn’t know he had implanted embryos.

We had several conversations before this was disclosed, and I warned him to go more slowly and to keep in conversation with the rest of the international scientific community, and more broadly the international perspectives on social and ethical matters.

He was doing that to some extent, but not deeply enough and not transparently enough.

It sounds like you were very thoughtful in the conversations you had with him and the advice you gave him. And I guess you operated with what you had. But do you have any regrets yourself?

I don’t have any regrets about the way I conducted myself. I regret that this happened this way for J.K., who is a very bright person, and a very nice person, a humble person.

He grew up in a poor urban farming village. He told me that at one point he wanted to ask out a certain girl that he thought was really pretty … but he was embarrassed to do so because her family owned the restaurant. And so you see how humble his origins were.

By the way, he did end up asking her out and he ended up marrying her, which is a happy story, except now they’re separated for years of crucial time, and they have little children. 

I know this is a bigger story than just J.K. and his family. But there’s a personal story to it too.

What happens He Jiankui? … Is his research career over?

It’s hard to imagine that a nation like China would not give him some some useful role in their society. A very intelligent and very well-educated young man. 

But on the other hand, he will be forever a sign of a very crucial and difficult moment for the human species. He’s not going outlive that.

It’s going to be interesting. I hope I get a chance to have good conversations with him again and hear his internal ruminations and perspectives on it all.

This (“I don’t have any regrets about the way I conducted myself”) is where Hurlbut lost me. I think he could have suggested that he’d reviewed and rethought everything and feels that he and others could have done better and maybe they need to rethink how scientists are trained and how we talk about science, genetics, and emerging technology. Interestingly, it’s his son who comes up with something closer to what I’m suggesting (this excerpt was quoted earlier in this posting from a December 30, 2019 article, by Carolyn Y. Johnson for the Washington Post),

“The fact that the individual at the center of the story has been punished for his role in it should not distract us from examining what supporting roles were played by others, particularly in the international scientific community and also the environment that shaped and encouraged him to push the limits,” said Benjamin Hurlbut [emphasis mine], associate professor in the School of Life Sciences at Arizona State University.

The man who CRISPRs himself approves

Josiah Zayner publicly injected himself with CRISPR in a demonstration (see my January 25, 2018 posting for details about Zayner, his demonstration, and his plans). As you might expect, his take on the He affair is quite individual. From a January 2, 2020 article for STAT, Zayner presents the case for Dr. He’s work (Note: Links have been removed),

When I saw the news that He Jiankui and colleagues had been sentenced to three years in prison for the first human embryo gene editing and implantation experiments, all I could think was, “How will we look back at what they had done in 100 years?”

When the scientist described his research and revealed the births of gene edited twin girls at the [Second] International Summit on Human Genome Editing in Hong Kong in late November 2018, I stayed up into the early hours of the morning in Oakland, Calif., watching it. Afterward, I couldn’t sleep for a few days and couldn’t stop thinking about his achievement.

This was the first time a viable human embryo was edited and allowed to live past 14 days, much less the first time such an embryo was implanted and the baby brought to term.

The majority of scientists were outraged at the ethics of what had taken place, despite having very little information on what had actually occurred.

To me, no matter how abhorrent one views [sic] the research, it represents a substantial step forward in human embryo editing. Now there is a clear path forward that anyone can follow when before it had been only a dream.

As long as the children He Jiankui engineered haven’t been harmed by the experiment, he is just a scientist who forged some documents to convince medical doctors to implant gene-edited embryos. The 4-minute mile of human genetic engineering has been broken. It will happen again.

The academic establishment and federal funding regulations have made it easy to control the number of heretical scientists. We rarely if ever hear of individuals pushing the ethical and legal boundaries of science.

The rise of the biohacker is changing that.

A biohacker is a scientist who exists outside academia or an institution. By this definition, He Jiankui is a biohacker. I’m also part of this community, and helped build an organization to support it.

Such individuals have much more freedom than “traditional” scientists because scientific regulation in the U.S. is very much institutionally enforced by the universities, research organizations, or grant-giving agencies. But if you are your own institution and don’t require federal grants, who can police you? If you don’t tell anyone what you are doing, there is no way to stop you — especially since there is no government agency actively trying to stop people from editing embryos.

… When a human embryo being edited and implanted is no longer interesting enough for a news story, will we still view He Jiankui as a villain?

I don’t think we will. But even if we do, He Jiankui will be remembered and talked about more than any scientist of our day. Although that may seriously aggravate many scientists and bioethicists, I think he deserves that honor.

Josiah Zayner is CEO of The ODIN, a company that teaches people how to do genetic engineering in their homes.

You can find The ODIN here.

Final comments

There can’t be any question that this was inevitable. One needs only to take a brief stroll through the history of science to know that scientists are going to push boundaries or, as in this case, press past an ill-defined grey zone.

The only scientists who are being publicly punished for hubris are Dr. He Jiankui and his two colleagues in China. Dr. Michael Deem is still working for Rice University as far as I can determine. Here’s how the Wikipedia entry for the He Jiankui Affair describes the investigation (Note: Links have been removed),

Michael W. Deem, an American bioengineering professor at Rice University and He’s doctoral advisor, was involved in the research, and was present when people involved in He’s study gave consent.[24] He was the only non-Chinese out of 10 authors listed in the manuscript submitted to Nature.[30] Deem came under investigation by Rice University after news of the work was made public.[58] As of 31 December 2019, the university had not released a decision.[59] [emphasis mine]

Meanwhile the scientists at Stanford are cleared. While there are comments about the Chinese government not being transparent, it seems to me that US universities are just as opaque.

What seems missing from all this discussion and opprobrium is that the CRISPR technology itself is problematic. My September 20, 2019 post features research into off-target results from CRISPR gene-editing and, prior, there was this July 17, 2018 posting (The CRISPR [clustered regularly interspaced short palindromic repeats]-CAS9 gene-editing technique may cause new genetic damage kerfuffle).

I’d like to see more discussion and, in line with Benjamin Hurlbut’s thinking, I’d like to see more than a small group of experts talking to each other as part of the process especially here in Canada and in light of efforts to remove our ban on germline-editing (see my April 26, 2019 posting for more about those efforts).

Harvard professor and leader in nanoscale electronics charged with making false statements about Chinese funding

I may be mistaken but the implication seems to be that Charles M. Lieber’s lies (he was charged today, January 28, 2020 ) are the ‘tip of the iceberg’ of a very large problem. Ellen Barry’s January 28, 2020 article for the New York Times outlines at least part of what the US government is doing to discover and ultimately discourage the theft of biomedical research from US laboratories.

Dr. Lieber, a leader in the field of nanoscale electronics, was one of three Boston-area scientists accused on Tuesday [January 28, 2020] of working on behalf of China. His case involves work with the Thousand Talents Program, a state-run program that seeks to draw talent educated in other countries.

American officials are investigating hundreds of cases of suspected theft of intellectual property by visiting scientists, nearly all of them Chinese nationals or of Chinese descent. Some are accused of obtaining patents in China based on work that is funded by the United States government, and others of setting up laboratories in China that secretly duplicated American research.

Dr. Lieber, who was arrested on Tuesday [January 28, 2020], stands out among the accused scientists, because he is neither Chinese nor of Chinese descent. …

Lieber is the Chair of Harvard’s Department of Chemistry and Chemical Biology and much more, according to his Wikipedia entry (Note: Links have been removed),

Charles M. Lieber (born 1959) is an American chemist and pioneer in the field of nanoscience and nanotechnology. In 2011, Lieber was recognized by Thomson Reuters as the leading chemist in the world for the decade 2000-2010 based on the impact of his scientific publications.[1] Lieber has published over 400 papers in peer-reviewed scientific journals and has edited and contributed to many books on nanoscience.[2] He is the principal inventor on over fifty issued US patents and applications, and founded the nanotechnology company Nanosys in 2001 and Vista Therapeutics in 2007.[3] He is known for his contributions to the synthesis, assembly and characterization of nanoscale materials and nanodevices, the application of nanoelectronic devices in biology, and as a mentor to numerous leaders in nanoscience.[4] Thompson Reuters predicted Lieber to be a recipient of the 2008 Nobel Prize in Chemistry [to date, January 28, 2020, Lieber has not received a Nobel prize].

Should you search Charles Lieber or Charles M. Lieber on this blog’s search engine, you will find a number of postings about his and his students’ work dating from 2012 to as recently as November 15, 2019.

Here’s another example from Barry’s January 28, 2020 article for the New York Times which illustrates just how shocking this is (Note: Links have been removed),

In 2017 he was named a University Professor, Harvard’s highest faculty rank, one of only 26 professors to hold that status. The same year, he earned the National Institutes of Health Director’s Pioneer Award for inventing syringe-injectable mesh electronics that can integrate with the brain.

Harvard’s president at the time, Drew G. Faust, called him “an extraordinary scientist whose work has transformed nanoscience and nanotechnology and has led to a remarkable range of valuable applications that improve the quality of people’s lives.”

Here’s a bit more about the Chinese program that Lieber is affiliated with,

Launched in 2008, its [China] Thousand Talents Program is an effort to recruit Chinese and foreign academics and entrepreneurs. According to a report in the China Daily, new recruits receive 1 million yuan, or about $146,000, from the central government, and a pledge of 10 million yuan for their ongoing research from the Chinese Academy of Sciences.

The recruitment flows both ways. Researchers of Chinese descent make up nearly half of the work force in American research laboratories, in part because American-born scientists are drawn to the private sector and less interested in academic careers.

I encourage you to read Barry’s entire article. It is jaw-dropping and, where Lieber is concerned, sad. It’s beginning to look like US universities are corrupt. The Jeffrey Epstein (a wealthy and convicted sexual predator and more) connection to the Massachusetts Institute of Technology, which led to the resignation of a prominent faculty member (Sept. 19, 2019 article by Anna North for Vox.com), and the Fall 2019 cheating scandal (gaining admission to big name educational institutions by paying someone other than the student to take exams, among many other schemes) suggest a reckoning might be in order.

ETA January 28, 2020 at 1645 hours: I found a January 28, 2020 article by Antonio Regalado for the MIT Technology Review which provides a few more details about Lieber’s situation,

Big money: According to the charging document, Lieber, starting in 2011,  agreed to help set up a research lab at the Wuhan University of Technology and “make strategic visionary and creative research proposals” so that China could do cutting-edge science.

He was well paid for it. Lieber earned a salary when he visited China worth up to $50,000 per month, as well as $150,000 a year in expenses in addition to research funds. According to the complaint, he got paid by way of a Chinese bank account but also was known to send emails asking for cash instead.

Harvard eventually wised up to the existence of a Wuhan lab using its name and logo, but when administrators confronted Lieber, he lied and said he didn’t know about a formal joint program, according to the government complaint.

I imagine the money paid by the Chinese government is in addition to Lieber’s Harvard salary (no doubt a substantial one especially since he’s chair of his department and one of a select number of Harvard’s University Professors) and in addition to any other deals he might have on the side.

Ethics of germline editing special CRISPR journal issue

Caption: The CRISPR Journal delivers groundbreaking multidisciplinary research, advances, and commentary on CRISPR, the extraordinary technology that gives scientists the power to cure disease and sculpt evolution. Credit: Mary Ann Liebert, Inc., publishers

The CRISPR Journal’s publisher, Mary Ann Liebert, Inc., released two notices about their special issue on ethics. I found this October 10, 2019 media alert on EurekAlert a little more informative than the other one,

Highlights from this Issue:

1. Human Germline Genome Editing: An Assessment
In the opening Perspective of the special issue on The Ethics of Human Genome Editing, Stanford Law professor Henry Greely argues that germline editing is not inherently bad or unethical, but the technology is unlikely to be particularly useful, at least in the near future. Greely takes issue with the notion that the human genome is “the heritage of humanity” – the equivalent of The Ark of the Covenant that “cannot be allowed to fall into the wrong hands.” He contrasts germline editing with the practical applications of preimplantation genetic testing and somatic gene therapy. Exceptions for germline editing might be found in the cases of rare couples where both partners have the same recessive disorder or one is homozygous for a dominant disease.

2. Pick Six: Democratic Governance of Germline Editing
Two international commissions, organized by the World Health Organization, the U.S. National Academies, and the Royal Society, have been launched to provide recommendations for the governance of human germline editing, prompted by the actions of He Jiankui and the 2018 CRISPR babies reports. In this Perspective, Jasanoff, Hurlbut, and Saha [Sheila Jasanoff, Harvard University {Cambridge, MA}, J. Benjamin Hurlbut, Arizona State University {Tempe, AZ}, and Krishanu Saha, University of Wisconsin-Madison] argue that such an approach is “premature and problematic.” Global democratic governance “demands a new mechanism for active, sustained reflection by scientists” in partnership with scholars from other disciplines and the public. The authors present six recommendations to promote democratic governance.

3. Just Say No to a Moratorium
In March 2019, Eric Lander, Francoise Baylis [emphasis mine], and colleagues issued a call for a temporary global moratorium on heritable genome editing. In this Perspective, Kerry Macintosh, author of Enhanced Beings, offers three reasons she opposes the imposition of a moratorium: the danger of a temporary ban becoming permanent; a disincentive to support appropriate research to make the technology safer and more effective; and the potential stigmatization of children born with edited genomes. Nations should regulate germline editing for safety and efficacy only, Macintosh says, without distinguishing between therapeutic applications and enhancement.

4. Who Speaks for Future Children?
Law professor Bartha Knoppers and Erika Kleiderman write that the recent calls for a moratorium on germline editing “may create an illusion of control over rogue science and stifle the necessary international debate surrounding an ethically responsible translational path forward.” Focusing efforts on enforcing current laws and fostering public dialogue is a better route, the authors suggest.

5. The Daunting Economics of Therapeutic Genome Editing
Ten years after the first gene editing clinical trial got underway, gene therapy is experiencing a renaissance. Recent approvals for some gene therapy drugs have been accompanied by exorbitant price tags, in one case exceeding $2 million. Looking ahead, Wilson [Ross C. Wilson, PhD, Innovative Genomics Institute, University of California, Berkeley] and Carroll [Dana Carroll, PhD, Department of Biochemistry, University of Utah School of Medicine] ask whether CRISPR can make good on its promise as “a great leveler” and “democratizing force in biomedicine”. They write: “Therapeutic genome editing must avoid several pitfalls that could substantially limit access to its transformative potential, especially in the developing world.” The costs of drug manufacture, testing, and delivery will have to come down to make the benefits of genome editing available to those most in need.

6. The Demand for Germline Editing: View from a Fertility Clinic
A common argument against human germline editing is that there is already a safe, proven technology to help couples have a healthy biological child — preimplantation genetic testing (PGT). In this Perspective, Manuel Viotti and colleagues from a leading IVF clinic in California strive to calculate the likely occurrence of cases where germline editing might offer couples opportunities to have a healthy biological child where PGT would not be applicable. The numbers are very small indeed.

7. Brave New World in the CRISPR Debate
In any discussion or warnings of designer babies and future dystopian societies based on genetic or reproductive technologies, exhibit A is invariably Aldous Huxley’s iconic 1932 novel, Brave New World. Indeed, David Baltimore referred to the novel at both of the international genome editing summits. In this Perspective, Derek So dissects the misuse of Brave New World, particularly regarding genome editing technology, enhancement, and eugenics. So [even offers a few less celebrated, but potentially more appropriate, examples from the sci-fi literature.

I highlighted Françoise Baylis’ name as she has been mentioned on this blog a few times and, if you’re curious, there’s an opportunity to hear her speak in Toronto (Ontario) tonight, Thursday, October 17, 2019. You can find out where and exactly when in my October 14, 2019 posting, under the first subheading, ‘… on the future of life forms …’.

The October 15, 2019 news release on EurekAlert offers much the same information but also includes this link to the journal issue where you can read it for free,

The Ethics of Human Genome Editing is the subject of intensive discussion and debate in a special issue of The CRISPR Journal, a new peer-reviewed journal from Mary Ann Liebert, Inc., publishers. Click here) to read the full-text issue free on The CRISPR Journal.

The issue contains 11 articles: nine Perspectives and two research articles on issues including human rights for the unborn, the economics of gene editing therapies, the pros and cons of a moratorium on genome editing, the real-world cases where germline editing could provide medical utility, and (on a lighter note) the use and misuse of “Brave New World.”

It looks like a very interesting and comprehensive lineup of topics related to ethics and editing the human germline. FYI, I covered the story about the CRISPR twins, Lulu and Nana, here in a November 28, 2018 posting, about the time the news first broke.

Revival of dead pig brains raises moral questions about life and death

The line between life and death may not be what we thought it was according to some research that was reported in April 2019. Ed Wong’s April 17, 2019 article (behind a paywall) for The Atlantic was my first inkling about the life-death questions raised by some research performed at Yale University, (Note: Links have been removed)

The brain, supposedly, cannot long survive without blood. Within seconds, oxygen supplies deplete, electrical activity fades, and unconsciousness sets in. If blood flow is not restored, within minutes, neurons start to die in a rapid, irreversible, and ultimately fatal wave.

But maybe not? According to a team of scientists led by Nenad Sestan at Yale School of Medicine, this process might play out over a much longer time frame, and perhaps isn’t as inevitable or irreparable as commonly believed. Sestan and his colleagues showed this in dramatic fashion—by preserving and restoring signs of activity in the isolated brains of pigs that had been decapitated four hours earlier.

The team sourced 32 pig brains from a slaughterhouse, placed them in spherical chambers, and infused them with nutrients and protective chemicals, using pumps that mimicked the beats of a heart. This system, dubbed BrainEx, preserved the overall architecture of the brains, preventing them from degrading. It restored flow in their blood vessels, which once again became sensitive to dilating drugs. It stopped many neurons and other cells from dying, and reinstated their ability to consume sugar and oxygen. Some of these rescued neurons even started to fire. “Everything was surprising,” says Zvonimir Vrselja, who performed most of the experiments along with Stefano Daniele.

… “I don’t see anything in this report that should undermine confidence in brain death as a criterion of death,” says Winston Chiong, a neurologist at the University of California at San Francisco. The matter of when to declare someone dead has become more controversial since doctors began relying more heavily on neurological signs, starting around 1968, when the criteria for “brain death” were defined. But that diagnosis typically hinges on the loss of brainwide activity—a line that, at least for now, is still final and irreversible. After MIT Technology Review broke the news of Sestan’s work a year ago, he started receiving emails from people asking whether he could restore brain function to their loved ones. He very much cannot. BrainEx isn’t a resurrection chamber.

“It’s not going to result in human brain transplants,” adds Karen Rommelfanger, who directs Emory University’s neuroethics program. “And I don’t think this means that the singularity is coming, or that radical life extension is more possible than before.”

So why do the study? “There’s potential for using this method to develop innovative treatments for patients with strokes or other types of brain injuries, and there’s a real need for those kinds of treatments,” says L. Syd M Johnson, a neuroethicist at Michigan Technological University. The BrainEx method might not be able to fully revive hours-dead brains, but Yama Akbari, a critical-care neurologist at the University of California at Irvine, wonders whether it would be more successful if applied minutes after death. Alternatively, it could help to keep oxygen-starved brains alive and intact while patients wait to be treated. “It’s an important landmark study,” Akbari says.

Yong notes that the study still needs to be replicated in his article which also probes some of the ethical issues associated with the latest neuroscience research.

Nature published the Yale study,

Restoration of brain circulation and cellular functions hours post-mortem by Zvonimir Vrselja, Stefano G. Daniele, John Silbereis, Francesca Talpo, Yury M. Morozov, André M. M. Sousa, Brian S. Tanaka, Mario Skarica, Mihovil Pletikos, Navjot Kaur, Zhen W. Zhuang, Zhao Liu, Rafeed Alkawadri, Albert J. Sinusas, Stephen R. Latham, Stephen G. Waxman & Nenad Sestan. Nature 568, 336–343 (2019) DOI: https://doi.org/10.1038/s41586-019-1099-1 Published 17 April 2019 Issue Date 18 April 2019

This paper is behind a paywall.

Two neuroethicists had this to say (link to their commentary in Nature follows) as per an April 71, 2019 news release from Case Western Reserve University (also on EurekAlert), Note: Links have been removed,

The brain is more resilient than previously thought. In a groundbreaking experiment published in this week’s issue of Nature, neuroscientists created an artificial circulation system that successfully restored some functions and structures in donated pig brains–up to four hours after the pigs were butchered at a USDA food processing facility. Though there was no evidence of restored consciousness, brains from the pigs were without oxygen for hours, yet could still support key functions provided by the artificial system. The result challenges the notion that mammalian brains are fully and irreversibly damaged by a lack of oxygen.

“The assumptions have always been that after a couple minutes of anoxia, or no oxygen, the brain is ‘dead,'” says Stuart Youngner, MD, who co-authored a commentary accompanying the study with Insoo Hyun, PhD, both professors in the Department of Bioethics at Case Western Reserve University School of Medicine. “The system used by the researchers begs the question: How long should we try to save people?”

In the pig experiment, researchers used an artificial perfusate (a type of cell-free “artificial blood”), which helped brain cells maintain their structure and some functions. Resuscitative efforts in humans, like CPR, are also designed to get oxygen to the brain and stave off brain damage. After a period of time, if a person doesn’t respond to resuscitative efforts, emergency medical teams declare them dead.

The acceptable duration of resuscitative efforts is somewhat uncertain. “It varies by country, emergency medical team, and hospital,” Youngner said. Promising results from the pig experiment further muddy the waters about the when to stop life-saving efforts.

At some point, emergency teams must make a critical switch from trying to save a patient, to trying to save organs, said Youngner. “In Europe, when emergency teams stop resuscitation efforts, they declare a patient dead, and then restart the resuscitation effort to circulate blood to the organs so they can preserve them for transplantation.”

The switch can involve extreme means. In the commentary, Youngner and Hyun describe how some organ recovery teams use a balloon to physically cut off blood circulation to the brain after declaring a person dead, to prepare the organs for transplantation.

The pig experiment implies that sophisticated efforts to perfuse the brain might maintain brain cells. If technologies like those used in the pig experiment could be adapted for humans (a long way off, caution Youngner and Hyun), some people who, today, are typically declared legally dead after a catastrophic loss of oxygen could, tomorrow, become candidates for brain resuscitation, instead of organ donation.

Said Youngner, “As we get better at resuscitating the brain, we need to decide when are we going to save a patient, and when are we going to declare them dead–and save five or more who might benefit from an organ.”

Because brain resuscitation strategies are in their infancy and will surely trigger additional efforts, the scientific and ethics community needs to begin discussions now, says Hyun. “This study is likely to raise a lot of public concerns. We hoped to get ahead of the hype and offer an early, reasoned response to this scientific advance.”

Both Youngner and Hyun praise the experiment as a “major scientific advancement” that is overwhelmingly positive. It raises the tantalizing possibility that the grave risks of brain damage caused by a lack of oxygen could, in some cases, be reversible.
“Pig brains are similar in many ways to human brains, which makes this study so compelling,” Hyun said. “We urge policymakers to think proactively about what this line of research might mean for ongoing debates around organ donation and end of life care.”

Here’s a link to and a citation to the Nature commentary,

Pig experiment challenges assumptions around brain damage in people by Stuart Youngner and Insoo Hyun. Nature 568, 302-304 (2019) DOI: 10.1038/d41586-019-01169-8 April 17, 2019

This paper is open access.

I was hoping to find out more about BrainEx, but this April 17, 2019 US National Institute of Mental Health news release is all I’ve been able to find in my admittedly brief online search. The news release offers more celebration than technical detail.

Quick comment

Interestingly, there hasn’t been much of a furor over this work. Not yet.

Genes, intelligence, Chinese CRISPR (clustered regularly interspaced short palindromic repeats) babies, and other children

This started out as an update and now it’s something else. What follows is a brief introduction to the Chinese CRISPR twins; a brief examination of parents, children, and competitiveness; and, finally, a suggestion that genes may not be what we thought. I also include a discussion about how some think scientists should respond when they know beforehand that one of their kin is crossing an ethical line. Basically, this is a complex topic and I am attempting to interweave a number of competing lines of query into one narrative about human nature and the latest genetics obsession.

Introduction to the Chinese CRISPR twins

Back in November 2018 I covered the story about the Chinese scientist, He Jiankui , who had used CRISPR technology to edit genes in embryos that were subsequently implanted in a waiting mother (apparently there could be as many as eight mothers) with the babies being brought to term despite an international agreement (of sorts) not to do that kind of work. At this time, we know of the twins, Lulu and Nana but, by now, there may be more babies. (I have much more detail about the initial controversies in my November 28, 2018 posting.)

It seems the drama has yet to finish unfolding. There may be another consequence of He’s genetic tinkering.

Could the CRISPR babies, Lulu and Nana, have enhanced cognitive abilities?

Yes, according to Antonio Regalado’s February 21, 2019 article (behind a paywall) for MIT’s (Massachusetts Institute of Technology) Technology Review, those engineered babies may have enhanced abilities for learning and remembering.

For those of us who can’t get beyond the paywall, others have been successful. Josh Gabbatiss in his February 22, 2019 article for independent.co.uk provides some detail,

The world’s first gene edited babies may have had their brains unintentionally altered – and perhaps cognitively enhanced – as a result of the controversial treatment undertaken by a team of Chinese scientists.

Dr He Jiankui and his team allegedly deleted a gene from a number of human embryos before implanting them in their mothers, a move greeted with horror by the global scientific community. The only known successful birth so far is the case of twin girls Nana and Lulu.

The now disgraced scientist claimed that he removed a gene called CCR5 [emphasis mine] from their embroyos in an effort to make the twins resistant to infection by HIV.

But another twist in the saga has now emerged after a new paper provided more evidence that the impact of CCR5 deletion reaches far beyond protection against dangerous viruses – people who naturally lack this gene appear to recover more quickly from strokes, and even go further in school. [emphasis mine]

Dr Alcino Silva, a neurobiologist at the University of California, Los Angeles, who helped identify this role for CCR5 said the work undertaken by Dr Jiankui likely did change the girls’ brains.

“The simplest interpretation is that those mutations will probably have an impact on cognitive function in the twins,” he told the MIT Technology Review.

The connection immediately raised concerns that the gene was targeted due to its known links with intelligence, which Dr Silva said was his immediate response when he heard the news.

… there is no evidence that this was Dr Jiankui’s goal and at a press conference organised after the initial news broke, he said he was aware of the work but was “against using genome editing for enhancement”.

..

Claire Maldarelli’s February 22, 2019 article for Popular Science provides more information about the CCR5 gene/protein (Note: Links have been removed),

CCR5 is a protein that sits on the surface of white blood cells, a major component of the human immune system. There, it allows HIV to enter and infect a cell. A chunk of the human population naturally carries a mutation that makes CCR5 nonfunctional (one study found that 10 percent of Europeans have this mutation), which often results in a smaller protein size and one that isn’t located on the outside of the cell, preventing HIV from ever entering and infecting the human immune system.

The goal of the Chinese researchers’ work, led by He Jiankui of the Southern University of Science and Technology located in Shenzhen, was to tweak the embryos’ genome to lack CCR5, ensuring the babies would be immune to HIV.

But genetics is rarely that simple.

In recent years, the CCR5 gene has been a target of ongoing research, and not just for its relationship to HIV. In an attempt to understand what influences memory formation and learning in the brain, a group of researchers at UCLA found that lowering the levels of CCR5 production enhanced both learning and memory formation. This connection led those researchers to think that CCR5 could be a good drug target for helping stroke victims recover: Relearning how to move, walk, and talk is a key component to stroke rehabilitation.

… promising research, but it begs the question: What does that mean for the babies who had their CCR5 genes edited via CRISPR prior to their birth? Researchers speculate that the alternation will have effects on the children’s cognitive functioning. …

John Loeffler’s February 22, 2019 article for interestingengineering.com notes that there are still many questions about He’s (scientist’s name) research including, did he (pronoun) do what he claimed? (Note: Links have been removed),

Considering that no one knows for sure whether He has actually done as he and his team claim, the swiftness of the condemnation of his work—unproven as it is—shows the sensitivity around this issue.

Whether He did in fact edit Lulu and Nana’s genes, it appears he didn’t intend to impact their cognitive capacities. According to MIT Technology Review, not a single researcher studying CCR5’s role in intelligence was contacted by He, even as other doctors and scientists were sought out for advice about his project.

This further adds to the alarm as there is every expectation that He should have known about the connection between CCR5 and cognition.

At a gathering of gene-editing researchers in Hong Kong two days after the birth of the potentially genetically-altered twins was announced, He was asked about the potential impact of erasing CCR5 from the twins DNA on their mental capacity.

He responded that he knew about the potential cognitive link shown in Silva’s 2016 research. “I saw that paper, it needs more independent verification,” He said, before adding that “I am against using genome editing for enhancement.”

The problem, as Silva sees it, is that He may be blazing the trail for exactly that outcome, whether He intends to or not. Silva says that after his 2016 research was published, he received an uncomfortable amount of attention from some unnamed, elite Silicon Valley leaders who seem to be expressing serious interest in using CRISPR to give their children’s brains a boost through gene editing. [emphasis mine]

As such, Silva can be forgiven for not quite believing He’s claims that he wasn’t intending to alter the human genome for enhancement. …

The idea of designer babies isn’t new. As far back as Plato, the thought of using science to “engineer” a better human has been tossed about, but other than selective breeding, there really hasn’t been a path forward.

In the late 1800s, early 1900s, Eugenics made a real push to accomplish something along these lines, and the results were horrifying, even before Nazism. After eugenics mid-wifed the Holocaust in World War II, the concept of designer children has largely been left as fodder for science fiction since few reputable scientists would openly declare their intention to dabble in something once championed and pioneered by the greatest monsters of the 20th century.

Memories have faded though, and CRISPR significantly changes this decades-old calculus. CRISPR makes it easier than ever to target specific traits in order to add or subtract them from an embryos genetic code. Embryonic research is also a diverse enough field that some scientist could see pioneering designer babies as a way to establish their star power in academia while getting their names in the history books, [emphasis mine] all while working in relative isolation. They only need to reveal their results after the fact and there is little the scientific community can do to stop them, unfortunately.

When He revealed his research and data two days after announcing the births of Lulu and Nana, the gene-scientists at the Hong Kong conference were not all that impressed with the quality of He’s work. He has not provided access for fellow researchers to either his data on Lulu, Nana, and their family’s genetic data so that others can verify that Lulu and Nana’s CCR5 genes were in fact eliminated.

This almost rudimentary verification and validation would normally accompany a major announcement such as this. Neither has He’s work undergone a peer-review process and it hasn’t been formally published in any scientific journal—possibly for good reason.

Researchers such as Eric Topol, a geneticist at the Scripps Research Institute, have been finding several troubling signs in what little data He has released. Topol says that the editing itself was not precise and show “all kinds of glitches.”

Gaetan Burgio, a geneticist at the Australian National University, is likewise unimpressed with the quality of He’s work. Speaking of the slides He showed at the conference to support his claim, Burgio calls it amateurish, “I can believe that he did it because it’s so bad.”

Worse of all, its entirely possible that He actually succeeded in editing Lulu and Nana’s genetic code in an ad hoc, unethical, and medically substandard way. Sadly, there is no shortage of families with means who would be willing to spend a lot of money to design their idea of a perfect child, so there is certainly demand for such a “service.”

It’s nice to know (sarcasm icon) that the ‘Silicon Valley elite’ are willing to volunteer their babies for scientific experimentation in a bid to enhance intelligence.

The ethics of not saying anything

Natalie Kofler, a molecular biologist, wrote a February 26, 2019 Nature opinion piece and call to action on the subject of why scientists who were ‘in the know’ remained silent about He’s work prior to his announcements,

Millions [?] were shocked to learn of the birth of gene-edited babies last year, but apparently several scientists were already in the know. Chinese researcher He Jiankui had spoken with them about his plans to genetically modify human embryos intended for pregnancy. His work was done before adequate animal studies and in direct violation of the international scientific consensus that CRISPR–Cas9 gene-editing technology is not ready or appropriate for making changes to humans that could be passed on through generations.

Scholars who have spoken publicly about their discussions with He described feeling unease. They have defended their silence by pointing to uncertainty over He’s intentions (or reassurance that he had been dissuaded), a sense of obligation to preserve confidentiality and, perhaps most consistently, the absence of a global oversight body. Others who have not come forward probably had similar rationales. But He’s experiments put human health at risk; anyone with enough knowledge and concern could have posted to blogs or reached out to their deans, the US National Institutes of Health or relevant scientific societies, such as the Association for Responsible Research and Innovation in Genome Editing (see page 440). Unfortunately, I think that few highly established scientists would have recognized an obligation to speak up.

I am convinced that this silence is a symptom of a broader scientific cultural crisis: a growing divide between the values upheld by the scientific community and the mission of science itself.

A fundamental goal of the scientific endeavour is to advance society through knowledge and innovation. As scientists, we strive to cure disease, improve environmental health and understand our place in the Universe. And yet the dominant values ingrained in scientists centre on the virtues of independence, ambition and objectivity. That is a grossly inadequate set of skills with which to support a mission of advancing society.

Editing the genes of embryos could change our species’ evolutionary trajectory. Perhaps one day, the technology will eliminate heritable diseases such as sickle-cell anaemia and cystic fibrosis. But it might also eliminate deafness or even brown eyes. In this quest to improve the human race, the strengths of our diversity could be lost, and the rights of already vulnerable populations could be jeopardized.

Decisions about how and whether this technology should be used will require an expanded set of scientific virtues: compassion to ensure its applications are designed to be just, humility to ensure its risks are heeded and altruism to ensure its benefits are equitably distributed.

Calls for improved global oversight and robust ethical frameworks are being heeded. Some researchers who apparently knew of He’s experiments are under review by their universities. Chinese investigators have said He skirted regulations and will be punished. But punishment is an imperfect motivator. We must foster researchers’ sense of societal values.

Fortunately, initiatives popping up throughout the scientific community are cultivating a scientific culture informed by a broader set of values and considerations. The Scientific Citizenship Initiative at Harvard University in Cambridge, Massachusetts, trains scientists to align their research with societal needs. The Summer Internship for Indigenous Peoples in Genomics offers genomics training that also focuses on integrating indigenous cultural perspectives into gene studies. The AI Now Institute at New York University has initiated a holistic approach to artificial-intelligence research that incorporates inclusion, bias and justice. And Editing Nature, a programme that I founded, provides platforms that integrate scientific knowledge with diverse cultural world views to foster the responsible development of environmental genetic technologies.

Initiatives such as these are proof [emphasis mine] that science is becoming more socially aware, equitable and just. …

I’m glad to see there’s work being done on introducing a broader set of values into the scientific endeavour. That said, these programmes seem to be voluntary, i.e., people self-select, and those most likely to participate in these programmes are the ones who might be inclined to integrate social values into their work in the first place.

This doesn’t address the issue of how to deal with unscrupulous governments pressuring scientists to create designer babies along with hypercompetitive and possibly unscrupulous individuals such as the members of the ‘Silicon Valley insiders mentioned in Loeffler’s article, teaming up with scientists who will stop at nothing to get their place in the history books.

Like Kofler, I’m encouraged to see these programmes but I’m a little less convinced that they will be enough. What form it might take I don’t know but I think something a little more punitive is also called for.

CCR5 and freedom from HIV

I’ve added this piece about the Berlin and London patients because, back in November 2018, I failed to realize how compelling the idea of eradicating susceptibility to AIDS/HIV might be. Reading about some real life remissions helped me to understand some of He’s stated motivations a bit better. Unfortunately, there’s a major drawback described here in a March 5, 2019 news item on CBC (Canadian Broadcasting Corporation) online news attributed to Reuters,

An HIV-positive man in Britain has become the second known adult worldwide to be cleared of the virus that causes AIDS after he received a bone marrow transplant from an HIV-resistant donor, his doctors said.

The therapy had an early success with a man known as “the Berlin patient,” Timothy Ray Brown, a U.S. man treated in Germany who is 12 years post-transplant and still free of HIV. Until now, Brown was the only person thought to have been cured of infection with HIV, the virus that causes AIDS.

Such transplants are dangerous and have failed in other patients. They’re also impractical to try to cure the millions already infected.

In the latest case, the man known as “the London patient” has no trace of HIV infection, almost three years after he received bone marrow stem cells from a donor with a rare genetic mutation that resists HIV infection — and more than 18 months after he came off antiretroviral drugs.

“There is no virus there that we can measure. We can’t detect anything,” said Ravindra Gupta, a professor and HIV biologist who co-led a team of doctors treating the man.

Gupta described his patient as “functionally cured” and “in remission,” but cautioned: “It’s too early to say he’s cured.”

Gupta, now at Cambridge University, treated the London patient when he was working at University College London. The man, who has asked to remain anonymous, had contracted HIV in 2003, Gupta said, and in 2012 was also diagnosed with a type of blood cancer called Hodgkin’s lymphoma.

In 2016, when he was very sick with cancer, doctors decided to seek a transplant match for him.

“This was really his last chance of survival,” Gupta told Reuters.

Doctors found a donor with a gene mutation known as CCR5 delta 32, which confers resistance to HIV. About one per cent of people descended from northern Europeans have inherited the mutation from both parents and are immune to most HIV. The donor had this double copy of the mutation.

That was “an improbable event,” Gupta said. “That’s why this has not been observed more frequently.”

Most experts say it is inconceivable such treatments could be a way of curing all patients. The procedure is expensive, complex and risky. To do this in others, exact match donors would have to be found in the tiny proportion of people who have the CCR5 mutation.

Specialists said it is also not yet clear whether the CCR5 resistance is the only key [emphasis mine] — or whether the graft-versus-host disease may have been just as important. Both the Berlin and London patients had this complication, which may have played a role in the loss of HIV-infected cells, Gupta said.

Not only is there some question as to what role the CCR5 gene plays, there’s also a question as to whether or not we know what role genes play.

A big question: are genes what we thought?

Ken Richardson’s January 3, 2019 article for Nautilus (I stumbled across it on May 14, 2019 so I’m late to the party) makes and supports a startling statement, It’s the End of the Gene As We Know It We are not nearly as determined by our genes as once thought (Note: A link has been removed),

We’ve all seen the stark headlines: “Being Rich and Successful Is in Your DNA” (Guardian, July 12); “A New Genetic Test Could Help Determine Children’s Success” (Newsweek, July 10); “Our Fortunetelling Genes” make us (Wall Street Journal, Nov. 16); and so on.

The problem is, many of these headlines are not discussing real genes at all, but a crude statistical model of them, involving dozens of unlikely assumptions. Now, slowly but surely, that whole conceptual model of the gene is being challenged.

We have reached peak gene, and passed it.

The preferred dogma started to appear in different versions in the 1920s. It was aptly summarized by renowned physicist Erwin Schrödinger in a famous lecture in Dublin in 1943. He told his audience that chromosomes “contain, in some kind of code-script, the entire pattern of the individual’s future development and of its functioning in the mature state.”

Around that image of the code a whole world order of rank and privilege soon became reinforced. These genes, we were told, come in different “strengths,” different permutations forming ranks that determine the worth of different “races” and of different classes in a class-structured society. A whole intelligence testing movement was built around that preconception, with the tests constructed accordingly.

The image fostered the eugenics and Nazi movements of the 1930s, with tragic consequences. Governments followed a famous 1938 United Kingdom education commission in decreeing that, “The facts of genetic inequality are something that we cannot escape,” and that, “different children … require types of education varying in certain important respects.”

Today, 1930s-style policy implications are being drawn once again. Proposals include gene-testing at birth for educational intervention, embryo selection for desired traits, identifying which classes or “races” are fitter than others, and so on. And clever marketizing now sees millions of people scampering to learn their genetic horoscopes in DNA self-testing kits.[emphasis mine]

So the hype now pouring out of the mass media is popularizing what has been lurking in the science all along: a gene-god as an entity with almost supernatural powers. Today it’s the gene that, in the words of the Anglican hymn, “makes us high and lowly and orders our estate.”

… at the same time, a counter-narrative is building, not from the media but from inside science itself.

So it has been dawning on us is that there is no prior plan or blueprint for development: Instructions are created on the hoof, far more intelligently than is possible from dumb DNA. That is why today’s molecular biologists are reporting “cognitive resources” in cells; “bio-information intelligence”; “cell intelligence”; “metabolic memory”; and “cell knowledge”—all terms appearing in recent literature.1,2 “Do cells think?” is the title of a 2007 paper in the journal Cellular and Molecular Life Sciences.3 On the other hand the assumed developmental “program” coded in a genotype has never been described.


It is such discoveries that are turning our ideas of genetic causation inside out. We have traditionally thought of cell contents as servants to the DNA instructions. But, as the British biologist Denis Noble insists in an interview with the writer Suzan Mazur,1 “The modern synthesis has got causality in biology wrong … DNA on its own does absolutely nothing [ emphasis mine] until activated by the rest of the system … DNA is not a cause in an active sense. I think it is better described as a passive data base which is used by the organism to enable it to make the proteins that it requires.”

I highly recommend reading Richardson’s article in its entirety. As well, you may want to read his book, ” Genes, Brains and Human Potential: The Science and Ideology of Intelligence .”

As for “DNA on its own doing absolutely nothing,” that might be a bit of a eye-opener for the Silicon Valley elite types investigating cognitive advantages attributed to the lack of a CCR5 gene. Meanwhile, there are scientists inserting a human gene associated with brain development into monkeys,

Transgenic monkeys and human intelligence

An April 2, 2019 news item on chinadaily.com describes research into transgenic monkeys,

Researchers from China and the United States have created transgenic monkeys carrying a human gene that is important for brain development, and the monkeys showed human-like brain development.

Scientists have identified several genes that are linked to primate brain size. MCPH1 is a gene that is expressed during fetal brain development. Mutations in MCPH1 can lead to microcephaly, a developmental disorder characterized by a small brain.

In the study published in the Beijing-based National Science Review, researchers from the Kunming Institute of Zoology, Chinese Academy of Sciences, the University of North Carolina in the United States and other research institutions reported that they successfully created 11 transgenic rhesus monkeys (eight first-generation and three second-generation) carrying human copies of MCPH1.

According to the research article, brain imaging and tissue section analysis showed an altered pattern of neuron differentiation and a delayed maturation of the neural system, which is similar to the developmental delay (neoteny) in humans.

Neoteny in humans is the retention of juvenile features into adulthood. One key difference between humans and nonhuman primates is that humans require a much longer time to shape their neuro-networks during development, greatly elongating childhood, which is the so-called “neoteny.”

Here’s a link to and a citation for the paper,

Transgenic rhesus monkeys carrying the human MCPH1 gene copies show human-like neoteny of brain development by Lei Shi, Xin Luo, Jin Jiang, Yongchang Chen, Cirong Liu, Ting Hu, Min Li, Qiang Lin, Yanjiao Li, Jun Huang Hong Wang, Yuyu Niu, Yundi Shi, Martin Styner, Jianhong Wang, Yi Lu, Xuejin Sun, Hualin Yu, Weizhi Ji, Bing Su. National Science Review, nwz043, https://doi.org/10.1093/nsr/nwz043 Published: 27 March 2019

This appears to be an open access paper,

Transgenic monkeys and an ethical uproar

Predictably, this research set off alarms as Sharon Kirkey’s April 12, 2019 article for the National Post describes in detail (Note: A link has been removed)l,

Their brains may not be bigger than normal, but monkeys created with human brain genes are exhibiting cognitive changes that suggest they might be smarter — and the experiments have ethicists shuddering.

In the wake of the genetically modified human babies scandal, Chinese scientists [as a scientist from the US] are drawing fresh condemnation from philosophers and ethicists, this time over the announcement they’ve created transgenic monkeys with elements of a human brain.

Six of the monkeys died, however the five survivors “exhibited better short-term memory and shorter reaction time” compared to their wild-type controls, the researchers report in the journa.

According to the researchers, the experiments represent the first attempt to study the genetic basis of human brain origin using transgenic monkeys. The findings, they insist, “have the potential to provide important — and potentially unique — insights into basic questions of what actually makes humans unique.”

For others, the work provokes a profoundly moral and visceral uneasiness. Even one of the collaborators — University of North Carolina computer scientist Martin Styner — told MIT Technology Review he considered removing his name from the paper, which he said was unable to find a publisher in the West.

“Now we have created this animal which is different than it is supposed to be,” Styner said. “When we do experiments, we have to have a good understanding of what we are trying to learn, to help society, and that is not the case here.” l

In an email to the National Post, Styner said he has an expertise in medical image analysis and was approached by the researchers back in 2011. He said he had no input on the science in the project, beyond how to best do the analysis of their MRI data. “At the time, I did not think deeply enough about the ethical consideration.”

….

When it comes to the scientific use of nonhuman primates, ethicists say the moral compass is skewed in cases like this.

Given the kind of beings monkeys are, “I certainly would have thought you would have had to have a reasonable expectation of high benefit to human beings to justify the harms that you are going to have for intensely social, cognitively complex, emotional animals like monkeys,” said Letitia Meynell, an associate professor in the department of philosophy at Dalhousie University in Halifax.

“It’s not clear that this kind of research has any reasonable expectation of having any useful application for human beings,” she said.

The science itself is also highly dubious and fundamentally flawed in its logic, she said.
“If you took Einstein as a baby and you raised him in the lab he wouldn’t turn out to be Einstein,” Meynell said. “If you’re actually interested in studying the cognitive complexity of these animals, you’re not going to get a good representation of that by raising them in labs, because they can’t develop the kind of cognitive and social skills they would in their normal environment.”

The Chinese said the MCPH1 gene is one of the strongest candidates for human brain evolution. But looking at a single gene is just bad genetics, Meynell said. Multiple genes and their interactions affect the vast majority of traits.

My point is that there’s a lot of research focused on intelligence and genes when we don’t really know what role genes actually play and when there doesn’t seem to be any serious oversight.

Global plea for moratorium on heritable genome editing

A March 13, 2019 University of Otago (New Zealand) press release (also on EurekAlert) describes a global plea for a moratorium,

A University of Otago bioethicist has added his voice to a global plea for a moratorium on heritable genome editing from a group of international scientists and ethicists in the wake of the recent Chinese experiment aiming to produce HIV immune children.

In an article in the latest issue of international scientific journal Nature, Professor Jing-Bao Nie together with another 16 [17] academics from seven countries, call for a global moratorium on all clinical uses of human germline editing to make genetically modified children.

They would like an international governance framework – in which nations voluntarily commit to not approve any use of clinical germline editing unless certain conditions are met – to be created potentially for a five-year period.

Professor Nie says the scientific scandal of the experiment that led to the world’s first genetically modified babies raises many intriguing ethical, social and transcultural/transglobal issues. His main personal concerns include what he describes as the “inadequacy” of the Chinese and international responses to the experiment.

“The Chinese authorities have conducted a preliminary investigation into the scientist’s genetic misadventure and issued a draft new regulation on the related biotechnologies. These are welcome moves. Yet, by putting blame completely on the rogue scientist individually, the institutional failings are overlooked,” Professor Nie explains.

“In the international discourse, partly due to the mentality of dichotomising China and the West, a tendency exists to characterise the scandal as just a Chinese problem. As a result, the global context of the experiment and Chinese science schemes have been far from sufficiently examined.”

The group of 17 [18] scientists and bioethicists say it is imperative that extensive public discussions about the technical, scientific, medical, societal, ethical and moral issues must be considered before germline editing is permitted. A moratorium would provide time to establish broad societal consensus and an international framework.

“For germline editing to even be considered for a clinical application, its safety and efficacy must be sufficient – taking into account the unmet medical need, the risks and potential benefits and the existence of alternative approaches,” the opinion article states.

Although techniques have improved in recent years, germline editing is not yet safe or effective enough to justify any use in the clinic with the risk of failing to make the desired change or of introducing unintended mutations still unacceptably high, the scientists and ethicists say.

“No clinical application of germline editing should be considered unless its long-term biological consequences are sufficiently understood – both for individuals and for the human species.”

The proposed moratorium does not however, apply to germline editing for research uses or in human somatic (non-reproductive) cells to treat diseases.

Professor Nie considers it significant that current presidents of the UK Royal Society, the US National Academy of Medicine and the Director and Associate Director of the US National Institute of Health have expressed their strong support for such a proposed global moratorium in two correspondences published in the same issue of Nature. The editorial in the issue also argues that the right decision can be reached “only through engaging more communities in the debate”.

“The most challenging questions are whether international organisations and different countries will adopt a moratorium and if yes, whether it will be effective at all,” Professor Nie says.

A March 14, 2019 news item on phys.org provides a précis of the Comment in Nature. Or, you ,can access the Comment with this link

Adopt a moratorium on heritable genome editing; Eric Lander, Françoise Baylis, Feng Zhang, Emmanuelle Charpentier, Paul Berg and specialists from seven countries call for an international governance framework.signed by: Eric S. Lander, Françoise Baylis, Feng Zhang, Emmanuelle Charpentier, Paul Berg, Catherine Bourgain, Bärbel Friedrich, J. Keith Joung, Jinsong Li, David Liu, Luigi Naldini, Jing-Bao Nie, Renzong Qiu, Bettina Schoene-Seifert, Feng Shao, Sharon Terry, Wensheng Wei, & Ernst-Ludwig Winnacker. Nature 567, 165-168 (2019) doi: 10.1038/d41586-019-00726-5

This Comment in Nature is open access.

World Health Organization (WHO) chimes in

Better late than never, eh? The World Health Organization has called heritable gene editing of humans ‘irresponsible’ and made recommendations. From a March 19, 2019 news item on the Canadian Broadcasting Corporation’s Online news webpage,

A panel convened by the World Health Organization said it would be “irresponsible” for scientists to use gene editing for reproductive purposes, but stopped short of calling for a ban.

The experts also called for the U.N. health agency to create a database of scientists working on gene editing. The recommendation was announced Tuesday after a two-day meeting in Geneva to examine the scientific, ethical, social and legal challenges of such research.

“At this time, it is irresponsible for anyone to proceed” with making gene-edited babies since DNA changes could be passed down to future generations, the experts said in a statement.

Germline editing has been on my radar since 2015 (see my May 14, 2015 posting) and the probability that someone would experiment with viable embryos and bring them to term shouldn’t be that much of a surprise.

Slow science from Canada

Canada has banned germline editing but there is pressure to lift that ban. (I touched on the specifics of the campaign in an April 26, 2019 posting.) This March 17, 2019 essay on The Conversation by Landon J Getz and Graham Dellaire, both of Dalhousie University (Nova Scotia, Canada) elucidates some of the discussion about whether research into germline editing should be slowed down.

Naughty (or Haughty, if you prefer) scientists

There was scoffing from some, if not all, members of the scientific community about the potential for ‘designer babies’ that can be seen in an excerpt from an article by Ed Yong for The Atlantic (originally published in my ,August 15, 2017 posting titled: CRISPR and editing the germline in the US (part 2 of 3): ‘designer babies’?),

Ed Yong in an Aug. 2, 2017 article for The Atlantic offered a comprehensive overview of the research and its implications (unusually for Yong, there seems to be mildly condescending note but it’s worth ignoring for the wealth of information in the article; Note: Links have been removed),

” … the full details of the experiment, which are released today, show that the study is scientifically important but much less of a social inflection point than has been suggested. “This has been widely reported as the dawn of the era of the designer baby, making it probably the fifth or sixth time people have reported that dawn,” says Alta Charo, an expert on law and bioethics at the University of Wisconsin-Madison. “And it’s not.”

Then about 15 months later, the possibility seemed to be realized.

Interesting that scientists scoffed at the public’s concerns (you can find similar arguments about robots and artificial intelligence not being a potentially catastrophic problem), yes? Often, nonscientists’ concerns are dismissed as being founded in science fiction.

To be fair, there are times when concerns are overblown, the difficulty is that it seems the scientific community’s default position is to uniformly dismiss concerns rather than approaching them in a nuanced fashion. If the scoffers had taken the time to think about it, germline editing on viable embryos seems like an obvious and inevitable next step (as I’ve noted previously).

At this point, no one seems to know if He actually succeeded at removing CCR5 from Lulu’s and Nana’s genomes. In November 2018, scientists were guessing that at least one of the twins was a ‘mosaic’. In other words, some of her cells did not include CCR5 while others did.

Parents, children, competition

A recent college admissions scandal in the US has highlighted the intense competition to get into high profile educational institutions. (This scandal brought to mind the Silicon Valey elite who wanted to know more about gene editing that might result in improved cognitive skills.)

Since it can be easy to point the finger at people in other countries, I’d like to note that there was a Canadian parent among these wealthy US parents attempting to give their children advantages by any means, legal or not. (Note: These are alleged illegalities.) From a March 12, 2019 news article by Scott Brown, Kevin Griffin, and Keith Fraser for the Vancouver Sun,

Vancouver businessman and former CFL [Canadian Football League] player David Sidoo has been charged with conspiracy to commit mail and wire fraud in connection with a far-reaching FBI investigation into a criminal conspiracy that sought to help privileged kids with middling grades gain admission to elite U.S. universities.

In a 12-page indictment filed March 5 [2019] in the U.S. District Court of Massachusetts, Sidoo is accused of making two separate US$100,000 payments to have others take college entrance exams in place of his two sons.

Sidoo is also accused of providing documents for the purpose of creating falsified identification cards for the people taking the tests.

In what is being called the biggest college-admissions scam ever prosecuted by the U.S. Justice Department, Sidoo has been charged with nearly 50 other people. Nine athletic coaches and 33 parents including Hollywood actresses Felicity Huffman and Lori Loughlin. are among those charged in the investigation, dubbed Operation Varsity Blues.

According to the indictment, an unidentified person flew from Tampa, Fla., to Vancouver in 2011 to take the Scholastic Aptitude Test (SAT) in place of Sidoo’s older son and was directed not to obtain too high a score since the older son had previously taken the exam, obtaining a score of 1460 out of a possible 2400.

A copy of the resulting SAT score — 1670 out of 2400 — was mailed to Chapman University, a private university in Orange, Calif., on behalf of the older son, who was admitted to and ultimately enrolled in the university in January 2012, according to the indictment.

It’s also alleged that Sidoo arranged to have someone secretly take the older boy’s Canadian high school graduation exam, with the person posing as the boy taking the exam in June 2012.

The Vancouver businessman is also alleged to have paid another $100,000 to have someone take the SAT in place of his younger son.

Sidoo, an investment banker currently serving as CEO of Advantage Lithium, was awarded the Order of B.C. in 2016 for his philanthropic efforts.

He is a former star with the UBC [University of British Columbia] Thunderbirds football team and helped the school win its first Vanier Cup in 1982. He went on to play five seasons in the CFL with the Saskatchewan Roughriders and B.C. Lions.

Sidoo is a prominent donor to UBC and is credited with spearheading an alumni fundraising campaign, 13th Man Foundation, that resuscitated the school’s once struggling football team. He reportedly donated $2 million of his own money to support the program.

Sidoo Field at UBC’s Thunderbird Stadium is named in his honour.

In 2016, he received the B.C. [British Columbia] Sports Hall of Fame’s W.A.C. Bennett Award for his contributions to the sporting life of the province.

The question of whether or not these people like the ‘Silicon Valley elite’ (mentioned in John Loeffler’s February 22, 2019 article) would choose to tinker with their children’s genome if it gave them an advantage, is still hypothetical but it’s easy to believe that at least some might seriously consider the possibility especially if the researcher or doctor didn’t fully explain just how little is known about the impact of tinkering with the genome. For example, there’s a big question about whether those parents in China fully understood what they signed up for.

By the way, cheating scandals aren’t new (see Vanity Fair’s Schools For Scandal; The Inside Dramas at 16 of America’s Most Elite Campuses—Plus Oxford! Edited by Graydon Carter, published in August 2018 and covering 25 years of the magazine’s reporting). On a similar line, there’s this March13, 2019 essay which picks apart some of the hierarchical and power issues at play in the US higher educational system which led to this latest (but likely not last) scandal.

Scientists under pressure

While Kofler’s February 26, 2019 Nature opinion piece and call to action seems to address the concerns regarding germline editing by advocating that scientists become more conscious of how their choices impact society, as I noted earlier, the ideas expressed seem a little ungrounded in harsh realities. Perhaps it’s time to give some recognition to the various pressures put on scientists from their own governments and from an academic environment that fosters ‘success’ at any cost to peer pressure, etc. (For more about the costs of a science culture focused on success, read this March 2, 2019 blog posting by Jon Tennant on digital-science.com for a breakdown.)

One other thing I should mention, for some scientists getting into the history books, winning Nobel prizes, etc. is a very important goal. Scientists are people too.

Some thoughts

There seems to be a great disjunction between what Richardson presents as an alternative narrative to the ‘gene-god’ and how genetic research is being performed and reported on. What is clear to me is that no one really understands genetics and this business of inserting and deleting genes is essentially research designed to satisfy curiosity and/or allay fears about being left behind in a great scientific race to a an unknown destination.

I’d like to see some better reporting and a more agile response by the scientific community, the various governments, and international agencies. What shape or form a more agile response might take, I don’t know but I’d like to see some efforts.

Back to the regular programme

There’s a lot about CRISPR here on this blog. A simple search of ‘CRISPR ‘in the blog’s search engine should get you more than enough information about the technology and the various issues ranging from intellectual property to risks and more.

The three part series (CRISPR and editing the germline in the US …), mentioned previously, was occasioned by the publication of a study on germline editing research with nonviable embryos in the US. The 2017 research was done at the Oregon Health and Science University by Shoukhrat Mitalipov following similar research published by Chinese scientists in 2015. The series gives relatively complete coverage of the issues along with an introduction to CRISPR and embedded video describing the technique. Here’s part 1 to get you started..