JANUARY 28, 2019
Scientists like Qiu Renzong, the former vice president of the Chinese Ministry of Health's ethics committee, have challenged the ethics of He Jiankui's use of CRISPR on two human embryos that led to the birth of twin girls.
It’s been two months since Chinese scientist He Jiankui shocked the world with the announcement that his lab had created the first genetically edited babies. Since then, much of the public furor surrounding the news has died down, even as He has been fired by the Southern University of Science and Technology. There is one important takeaway from the controversy that seems to have gone overlooked in the CRISPR ethics discussion: defining the ethics of editing human life should not be left to scientists alone.
The research community widely agreed that He and his colleagues crossed an ethical line with the first inheritable genetic modification of human beings. Gene-editing experts as well as bioethicists described the transgression as being conducted by a “rogue” individual. But when leading voices such as NIH Director Francis Collins assert that He’s work “represents a deeply disturbing willingness by Dr. He and his team to flout international ethical norms,” what are they actually expressing concern about? Who determines what are the ethics of altering human life?
We believe that the alarm being sounded by the scientific community isn’t really about ethics. It’s about protecting a particular form of scientific self-governance, which the “ethics” discourse supports. What are currently treated as matters of research ethics are in fact political and social questions of fundamental human importance.
Key decisions about when and how it will be appropriate to make inheritable changes to human beings currently lie in the hands of scientists. Although ethics are repeatedly invoked, the most prominent condemnations of He’s actions don’t actually address whether it’s ethical to tinker with human life through gene editing. A largely ignored part of the story are the five “draft ethical principles” of He’s lab at the Southern University of Science and Technology of China. If the outcry from scientists was truly about ethics, we would be seeing a discussion of the relative merits of He’s ethical principles, engagement with their content, and perhaps an exploration of how to jointly achieve a better set of operating principles. Instead, the ethics of using CRISPR for germline gene editing have apparently been determined and settled among scientists, closing down a meaningful debate about the limits and opportunities of genetic engineering.
In this sense, the values that will guide whether and how human life is transformed appear to be off the table for public deliberation. Reactions to He’s announcement reveal instead anxiety on the part of the scientific community about “knee-jerk” regulations that would make it more difficult to do gene-editing research, not to mention damage to the public’s trust in gene editing. Scientists articulated more concern about maintaining their authority to unilaterally transform human biology than a willingness to have a public debate about the ethics of whether — and under what conditions — such transformation should take place.
Instead of sparking debate, the invocation of ethics has played a central role in persuading the public and policy makers that scientists are able to responsibly foresee and manage the social implications of emerging technologies on behalf of the public good. How such a delegation of ethics can end up harming the public is exemplified in the digital domain, with Cambridge Analytica being just the latest in a series of instances of data misuse and privacy breaches.
Rather than being seen as an anomaly, He’s actions should be a reminder of the tensions routinely produced by our long-standing culture of scientific self-governance. There is little preventing other scientists from doing something similar to He’s CRISPR shocker. Headlines declaring of scientists “Now, the moment they feared may have come” and remarks that the “genie is out of the bottle” suggest a general feeling of inevitability, that no one could really avoid such a step from being taken at some point.
In an interview with Science magazine, leading biologist George Church described himself as one of the contributors to reports calling for a voluntary international moratorium on gene editing for human reproduction. Yet in defending He, Church argued that a moratorium “is not a permanent ban forever.” Instead, any proposed moratorium can be seen as a checklist for what scientists think should happen before technological advance proceeds.
The performance of scientists dutifully following such a checklist offers the image of careful deliberation and effective self-governance, though it really accomplishes little more than a delay on the march toward inheritable gene editing in humans. The current consensus among scientists regarding CRISPR ethics presents gene editing as a technology of last resort, but nevertheless one worth pursuing under the right conditions.
Without true public discourse that includes an array of other stakeholders, scientists are in the position of imposing their own values and judgements about when and why to genetically engineer humans. These values address only the (presumably always advancing) frontiers of science: they concentrate on the ethical rules of where, how and when the first case of genetic modification in humans should take place. They don’t consider whether it should take place at all, or how to deal with subsequent uses and future consequences of such technological capacities once they are the purview of the market and not of scientific ethics. In this sense, current CRISPR ethics operate in a narrow mode of scientific enablement, shirking responsibility for the human futures they seek to alter.
As Ben Hurlbut, a colleague of ours at Arizona State University, wrote in Nature, “He appropriated responsibility for a decision that belongs to all of us” — not just to the scientific community (Hurlbut met He in 2017 and has since corresponded with him about the ethics of genome editing). The ethical performance of ticking the boxes and finding the right conditions for the first case of inheritable human gene editing effectively bypasses key questions of public concern, most notably whether editing the human genome is desirable, how that decision should be made, and by whom. Reactions to He’s news have largely ignored suggestions for opening the discussion to a wider range of voices, such as the call for a global observatory for gene editing. Such an international deliberative body that gathers individuals across disciplines and civil society organizations and also provides opportunity for public input would be a first step towards meaningfully addressing the ethics of gene editing.
What the He case should draw our attention to are the troubling politics of who is authorized to decide the path forward for fundamentally altering human life, and on what basis. Those who have framed the prevailing response to He’s work have a strong interest in maintaining their high ethical ground. Public discussion led by scientists and bioethicists continues to validate scientific experts as the rightful arbiters of scientific and technological ethics and delegates decision making to those sitting in the driver’s seat of genetic research and development. Yet broadening the range of voices in the discussion is fundamental for defining a future with gene editing that is desirable for all of us.
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Originally Posted by timosman
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