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:
“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.
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).