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The hubris of some scientists knows no bounds. Less than a year after He Jiankui, a Chinese biophysicist, drew scorn and censure for creating gene-edited twins, Denis Rebrikov, a Russian molecular biologist, boldly announced his plan to follow in He’s genome editing footsteps. Rebrikov’s initial stated goal for his proposed research was to prevent the transmission of HIV from infected women to their offspring, though he later suggested other targets, including dwarfism, deafness, and blindness.

In 1998, Nobel laureate Mario Capecchi suggested that resistance to HIV infection was a genetic enhancement that might appeal to potential parents. Twenty years later, in November 2018, He revealed his use of CRISPR-Cas9 genome editing technology to disable a gene called CCR5 in an attempt to create children with resistance to HIV.

He’s research activities were known to a number of senior American scientists, all of whom elected to remain silent about his work. It was only after the twins’ birth that the world learned of this secret science. Matthew Porteus, one of the scientists who was complicit in the silence, summarized his promise of confidentiality to He this way:

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“You’re a scientist talking to a scientist. … Our culture is that you respect confidentiality and that when people reveal things in confidence to you, you respect that confidence. … And I said, well, I’m not going to publicly discuss what you just told me because that is for you to publicly discuss.”

A groundswell of condemnation followed He’s public announcement of the twins’ birth. There was pointed criticism from Feng Zhang, one of the co-discoverers of the CRISPR-Cas9 genome editing technology, and from David Baltimore, who co-chaired international summits of human genome editing in 2015 and 2018. Quoting from the first International Summit Statement, Zhang and Baltimore independently affirmed that the experiment was irresponsible given the lack of data confirming the safety and effectiveness of using CRISPR in humans, as well as the absence of broad societal consensus.

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Members of the organizing committee for the 2018 International Summit on Human Genome Editing — where He first presented some of the details of his research — described the experiment as irresponsible and said it failed to meet international norms. The committee did not, however, reaffirm the position outlined in the 2015 Summit Statement that “[i]t would be irresponsible to proceed with any clinical use of germline editing unless and until: (i) the relevant safety and efficacy issues have been resolved, based on an appropriate understanding and balancing of risks, potential benefits, and alternatives, and (ii) there is broad societal consensus about the appropriateness of the proposed application.” Instead, the committee concluded that heritable genome editing could be acceptable in the future and suggested that it was time “to define a rigorous responsible translational pathway toward such trials.”

This shift in orientation is particularly noteworthy when considering the following. In 2015, a researcher performed genome editing on non-viable human embryos that did not involve the transfer of edited embryos to a woman for reproduction. The first summit organizing committee determined that heritable genome editing research was irresponsible “unless and until …” In 2018, He performed genome editing on viable human embryos and transferred these edited embryos to a woman who gave birth to gene-edited children, yet the second summit organizing committee asserted the need for a responsible pathway forward.

Several authors of the 2015 Summit Statement, myself included, disagreed with the position taken by the authors of the 2018 Summit Statement. Along with others, including two of the three CRISPR pioneers — Emmanuelle Charpentier and Feng Zhang — we issued a call in March 2019 to adopt a moratorium on heritable genome editing. Jennifer Doudna, the other CRISPR pioneer, expressly declined to participate in this initiative.

We reiterated the importance of dialogue within and across nations, and the need for broad societal consensus on the appropriateness of altering the human genome for a particular purpose before any such research could proceed. The purpose of the proposed global moratorium was to provide time for careful study of the relevant technical and ethical issues to determine whether to pursue heritable human genome editing and, if that question were answered in the affirmative, to then determine how to proceed with making modifications to the human genome.

The whether of heritable human genome editing has not been resolved, and yet some scientists continue to race ahead with the how of it, essentially ignoring the myriad calls for public consultation. To be sure, other scientists are willing to heed the call, but would prefer to limit public consultation to public education.

I don’t agree with this position. As I write in a new book, “Altered Inheritance,” we need to move the dial from public education (which typically is limited to talking at the public), to public engagement (which necessarily involves listening to the public), and then on to public empowerment (which is about shared decision-making).

To this end, we need slow science. Science needs time to think and to digest. Time is also needed to promote ethics literacy and to facilitate broad societal consensus — where the goal is unity, not unanimity. Decision-making by consensus is about engaged, respectful dialogue and deliberation, where all participants recognize at the outset that knowledge is value laden; that we can and should learn from each other; and that no one should impose his or her will on others.

Metaphorically speaking, the human genome belongs to all of us. So we should all have a say in whether to proceed with making heritable changes to our shared genome. Decision-making by consensus, which begins with outreach and openness, is a means to this end. The goal is to create an environment in which all positions (not all persons) can be heard and understood, and in which there are reasonable opportunities for integrity-preserving compromises in pursuit of the common good. The underlying values are inclusivity, responsibility, self-discipline, respect, co-operation, struggle, and benevolence.

Scientists can meaningfully contribute to consensus building around genome editing. As individuals and as committee members, for example, they can effectively serve the common good by helping policymakers, legislators, and members of the public better align scientific information and opportunities with discrete values and interests.

I wrote “Altered Inheritance” as a call to action. It is a call for scientists to slow down, to reflect deeply on their science and their priorities, and to find meaningful ways to contribute to science policy in pursuit of the common good. It is also a call for all of us to take collective responsibility for the biological and social future of humankind as we think carefully about what kind of world we want to live in, and how genome editing technology might help us build that world.

Franҫoise Baylis is University Research Professor at Dalhousie University in Halifax, Nova Scotia, and author of “Altered Inheritance: CRISPR and the Ethics of Human Genome Editing” (Harvard University Press, September 2019).

  • We may face a stark choice between germline editing in ourselves or in our “environment” to keep ourselves safe, eg to alter mosquitoes or ticks not to carry West Nile or Lyme. We have been hacking our immune systems with innoculations & vaccines for centuries now. It isn’t clear to us even now how this affects the next generation.

    Radical change to humanity’s size or even it’s urges – like meat eating or sexual violence – is not out of the question as a response to our social & ecological limitations. We should be ready to consider that before we consider an irreversible change to our whole ecosystem, such as geoengineered bacteria to suck CO2.

    Humans are not special. We are a domesticated species. We are modified already by selective breeding & social winnowing. If we will GM “our” animals & plants it morally follows that we must GM ourselves to minimize the risk of modifying the biosphere to the point of ecophage/runaway.

    • I allude to this possibility in the book “Altered Inheritance” (and in earlier writings)

      “Imagine, for example, making humans mildly intolerant to red meat (to decrease red meat consumption and thereby reduce greenhouse gas emissions resulting from livestock farming), making humans smaller (to reduce our ecological footprint by needing to consume less resources), making humans less fertile (to lower birth rates and reduce demand for resources), or making humans more altruistic and empathetic (to have them better understand and appreciate the suffering experienced by others and thus be more willing to cooperate in finding solutions for the benefit of all). Alternatively, what about the option of making “pollution resistant ‘human beings’ with genes for degrading polychlorinated biphenyls (PCBs); poison-resistant ‘human beings’ with genes coding for enzymes that help to break down poisons; or ‘human beings’ equipped with feathery gills to survive both on land and under the sea”? Another possibility would be to genetically modify humans to survive on some other planet (or spacecraft) that is uninhabitable by humans today. The idea here would be to promote speciation using heritable human genome editing, perhaps in tandem with some kind of gene drive to push the genetic modification through the species until every being has been changed.”

  • The book “Altered Inheritance” includes a chapter on slow science and it begins with a reference to Isabelle Stengers’ book. Embracing slow science will not be an easy thing, as the rhetoric of fast science (i.e., science driven by personal and commercial interests) has considerable traction. As a starting point, we ought not to reward those who race ahead without a clear understanding of what they are racing toward.

    More generally, scientists need time for careful reflection on priorities, and considered judgment on what counts as progress — where scientific validity, scientific value and social value are all part of the mix.

  • I totally stand by you. We need slow science as Isabelle Stengers wrote in her book, “Another Science is Possible.” But my question is how we realize slow science in the highly competitive academic-industrial environment. Could you give me an answer?

    • The book “Altered Inheritance” includes a chapter on slow science and it begins with a reference to Isabelle Stengers’ book. Embracing slow science will not be an easy thing, as the rhetoric of fast science (i.e., science driven by personal and commercial interests) has considerable traction. As a starting point, we ought not to reward those who race ahead without a clear understanding of what they are racing toward.

      More generally, scientists need time for careful reflection on priorities, and considered judgment on what counts as progress — where scientific validity, scientific value and social value are all part of the mix.

    • Chaos stablizes over tima. And so do your worries and the competitive world. So don’t worry 😀

  • Despite the hype and false promises surrounding the genome editing technology, it needs to be clearly understood that it would work in some but not all of desirable cases. This is dictated by its basic principle and the features of the human genome that are not clearly understood at present. We cannot rely on the progress of this understanding being all in favor of the genome editing. Thus, one should not overestimate the impact of it, since as always, the devil is in the details.

    • Just let me outline a few of the desirable cases:

      Babies resistant to cancer – and forget the UK study about the babies maybe not living as long as us – they have never made the study on Chinese populations throughout the information is not accurate

      Us and our children living illness free lives

      Being able to select the gender of our babies and promote their overall health from birth

      Cloning ourselves

      Creating an automated demethylation system for our DNA so we could live practically age free

      Aiding our DNA replication and healing processes

      etc.

      You think of them. Just make a poll for each one and you’ll see people from allover the world are living a desperate life against the clock trying to either cure themselves or create a better world and chance of survival for their children.

      And one more thing, NOBODY likes to take medicines so I personally have nothing against cloning myself or gene editing my children.

    • Andreea Enciu, You make reference to a world that is both illness free and age free. Do I understand correctly that you are among those interested in immortality? If so, what is your solution to the problem of overpopulation? Also, what is your definition of “illness”. Denis Rebrikov wants to use CRISPR to modify the GJB2 gene. Members of the Deaf community object that Deafness is a rich and diverse way of being in the world.

    • In discussing the science and ethics of human genome editing it is very important to distinguish between somatic cell genome editing (which aims to help patients), and heritable germline genome editing (which involves the genetic modification of reproductive cells and embryos created in a lab). Altered Inheritance is about the ethics of manipulating embryos. Embryos are not patients.

  • Dr. Baylis is to be commended for taking on this issue. With that, and respectfully so: the call to “slow down” flies in the face of the fact that reality will continue to charge ahead, no matter how slow the scientists are. For this reason, starting with the initial publications on this in 2015 (the Napa summit organized by Jennifer Doudna, https://www.ncbi.nlm.nih.gov/pubmed/25791083, and the Nature commentary initiated by this author https://www.ncbi.nlm.nih.gov/pubmed/25810189), the scientific community already has, and continues to, vigorously take collective responsibility over this issue. The resulting NAS Commission (http://nationalacademies.org/gene-editing/international-commission/index.htm) has the explicit mandate to “develop a framework identifying scientific, medical, and ethical requirements to consider as part of a potential pathway from research to clinical use — if society concludes that heritable human genome editing applications are acceptable.” Thus, scientists are doing their job: as the experts on gene editing and human genetics and disease, they are working to provide a data-based comprehensive summary of the biomedical issues at hand – an assessment to then be used in the context of a society-wide decision-making process.

    • At this time, there are two international initiatives underway that aim to address the ethics and governance of human genome editing — the World Health Organization (WHO) Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome Editing and the International Commission on the Clinical Use of Human Germline Genome Editing convened by the United States National Academy of Science and National Academy of Medicine and the Royal Society in the United Kingdom. It is instructive to compare and contrast the mandate as well as the membership of both committees. Full disclosure: I am a member of the WHO committee.

      https://www.who.int/ethics/topics/human-genome-editing/committee-members/en/

      http://nationalacademies.org/gene-editing/international-commission/commission-members/bios/index.htm

      In my book “Altered Inheritance” I discuss four idealized roles for scientists in discussion and debate on the ethics and governance of genome editing — the pure scientist, the science analyst, the issue advocate and the science diplomat. Scientists, in one of more of these roles, have much to contribute to ongoing efforts at public education, public engagement and public empowerment. These contributions will be of critical importance in regaining public trust.

      A recent Pew Research survey suggests that nearly a third of respondents (32%) believe that research scientists “don’t pay attention to the moral values of society”, 29% do not consider scientists honest, and 26% say that scientists are “close-minded.”

      https://www.pewresearch.org/fact-tank/2019/08/19/most-americans-have-positive-image-of-research-scientists-but-fewer-see-them-as-good-communicators/

      This suggests the need for meaningful dialogue not only between academics in the humanities and natural sciences, but also between all academic elites and the public.

  • “It is also a call for all of us to take collective responsibility for the biological and social future of humankind as we think carefully about what kind of world we want to live in, and how genome editing technology might help us build that world.”
    I would say, “Let’s do it know”. I am old and need all the help i can get. To not to be dead, I need age regression.
    I rather have Darwinism take car of it, then some “collective responsibility” FREEDOM FROM DEATH NOW!!!

    • This is an interesting perspective that, I have to admit, I do not understand. In the Prologue to my book “Altered Inheritance” I tell the story of a conversation I had with a young man in an airport lounge. He was a CRISPR enthusiast and longed for a future in which humans could live forever. I thought then (as I do now) “Why would anyone want to live forever?” I can appreciate an interest in “living better” (and maybe even an interest in “living a ‘bit’ longer”), but not an interest in” living forever”.

      “From my perspective, part of what makes life previous is the fact that it is finite. We have only so much time in which to experience the world.” Perhaps this perspective reflects a failure of imagination on my part.

    • @Francoise Baylis
      Evolution has always been controlled by mutation, that is by not strictly following the genetic code. From now on the driving force will be goal oriented evolution and mutation will be replaced by Homo sapiens breaking the laws. I see Homo immortalis on the horizon.

    • @Alfred Schickentanz
      If, as you suggest, we are moving to “goal-oriented” evolution, then we need to worry about who sets the goals… Much of my book is about the importance of pursuing the common good and the need for “broad societal consensus” on what goals should be pursued.

    • @ Francoois Baylis,
      I don’t think “broad societal consensus” has ever been a driving force in our evolution. “aberrant behavior” (mutation) is what got us to the status quo.
      This is a quote from my website http://www.homo-immortalis-omnipotent.com

      “Living in “Infinite Space-Time”! No more “human created secondhand God’s”.
      The function assigned to GOD is now available through understanding
      the Universe we are part of. We will be the Engineers of our own body chemistry, in the Infinity of Space-Time we can live forever.
      Biotechnology will control the “aging process” (we don’t wear out, but are DNA programmed to age), and “involuntary death” will not exist any more.
      Science, Gene Engineering, Nano Technology, Epigenesis, Astrophysics
      etc. and Extra Terrestrial Migration will allow for “Goal Oriented Evolution”.

      “we need to worry about who sets the goals…”
      Since i am growing old and will be dead with out a (mutation), i feel what ever it takes, Homo Immortalis Omnipotent should be the goal.

  • I carry the Huntington’s Gene and I am symptomatic. Please have more information sent to me !!!!!🙏🙏🙏 thank you. Morgan Smith

    • Chapter 1 of my book “Altered Inheritance” is on Huntington’s Disease. You should be able to find a copy of the book at your local library (if they don’t have it, you can ask them to buy a copy for the library). Alternatively, you can purchase a copy online.

  • I, personally, am very interested in how CRISPR is developing. I have a genetic brain disease called Spino-cerebellar ataxia in which there is no cure and no treatment and CRISPR has, if nothing else, given me hope where there was nothing.

  • Reactionary, status quo profiteering nonsense. Progress can’t come fast enough for enormously suffering people hitherto without hope. Damn the costs; get out of the way.

    • I am not sure what you mean by “status quo profiteering”. Perhaps you can explain this to me.

      Progress is a wonderful thing and should be pursued. But what counts as “progress” is contentious. On the last page of my book “Altered Inheritance” I write: If … this technology can help reduce inequity, then we have a responsibility to ensure that it is directed in such a way as to promote justice and fairness. But if it has no hope of addressing this challenge, then we must seriously weight the opportunity costs in continuing to invest time, talent and treasure in developing heritable human genome editing technology.”

      So for me, “progress” is about making this world a better place for us all…

      Further, as noted in an earlier reply to another comment, in discussing the science and ethics of human genome editing it is very important to distinguish between somatic cell genome editing (which aims to help patients who are suffering), and heritable germline genome editing (which involves the genetic modification of reproductive cells and embryos created in a lab). Altered Inheritance is about the ethics of manipulating embryos. Embryos are not patients.

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