Bioethics Forum Essay
Pursue Public Engagement, but Don’t Expect ‘Broad Societal Consensus’
A prominent group of scientists, bioethicists, and other specialists from around the world recently called for a global moratorium on clinical uses of human germline editing—“changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children.” Before a country allows this to proceed, these authors recommend establishing “broad societal consensus in the nation about the appropriateness of the application.” They are not alone in anticipating or seeking societal consensus.
But is broad societal consensus on human germline editing really achievable? I don’t think so.
What will we disagree about? Well, for starters, most acknowledge that human life begins at conception, but some grant embryos a moral status equivalent to persons. For those holding this conviction, destruction of any embryos not selected for implantation would be morally wrong. Many scientists and secular ethicists object to such equivalency.
People may be opposed to human germline editing for other reasons. Some may feel that editing human embryos requires value judgments about human characteristics that go against a foundational assumption of many societies—that all humans are created equal. Others may fear that germline editing would devalue the lives of those living with disabilities or differences. Society may be less willing to provide accommodations if reproduction increasingly involves choices, whether by selecting embryos for certain genetic variants or by using gene editing to produce specific genotypes. Given that no individual yet exists, some may place all types of human germline editing outside the scope of medicine.
If clinical applications are ever allowed, I doubt there will be consensus about which gene edits would be permissible. We can expect the most support for edits intended to prevent serious diseases. Some individuals who are affected by genetic diseases want germline editing technology to proceed as quickly as possible. There is significantly less support for editing human embryos to influence non-life-threatening traits.
A 2017 report by the National Academies of Sciences, Engineering and Medicine concluded that implantation of gene-edited human embryos could proceed ethically under certain circumstances, but only if a reliable oversight system would prevent embryonic editing for applications other than preventing a serious disease.
But how do we define serious disease? Would increased risk for adult-onset cancer be serious enough to allow embryonic gene editing? Aside from the complexities of defining what is serious, the same gene edit may bring one individual into a “normal” range of function, but serve as an enhancement for another.
Not everyone believes that enhancement should be off the table. Some individuals have expressed interest in pursuing germline editing for enhancement purposes. Some assert a moral obligation to enhance human embryos if we can. Others are open to the possibilities. Enhancement is not in and of itself an unethical pursuit—think of education, coffee, and many commonplace medical procedures: braces, glasses, vaccines, cosmetic surgeries, to name but a few.
Some contend that germline editing supports justice if it can give future children traits that they would not otherwise inherit. But others worry the technology will further the divide between haves and have-nots. One philosopher warns of the risks of creating human obsolescence, if enhancements for each successive generation are better than the last.
Although some countries may “decide this is a line that should not be crossed,” other jurisdictions may be more permissive. If gene editing technology progresses to a point where genetic enhancements of embryos are possible, those who have the resources and want to give their children a gene editing advantage may avail themselves of medical tourism.
Scientists and bioethicists must not overstate the goals of public engagement, since “broad societal consensus” will not be obtainable, given the plurality of cultures and diversity of ideas in our society and worldwide. We must also acknowledge that not every citizen will have equal opportunity to form, voice, or exercise their opinion on heritable human gene editing. Although gene editing may impact all of us, those with the biggest vested interests (governments, investors, and scientists) and those with the loudest voices (mobilized groups of relatively wealthy individuals) will likely control where the technology goes from here.
That does not mean that public engagement is without value. We must strive to give everyone the chance to weigh in if we want to proceed ethically and inclusively. We can and do influence each other. Governments can enact enforceable laws and many stakeholders can play a supporting role in allowing, prohibiting, and/or shaping clinical research involving human embryos that have been genetically modified. In societies with democratically elected governments, the electorate can shape policies.
There are international efforts underway to address the scientific and ethical questions posed by human germline engineering. Just last week, the U.S. National Academy of Sciences, the U.S. National Academy of Medicine and the Royal Society of the U.K. announced the formation of an international commission tasked with developing a framework that can guide assessment of clinical applications of heritable human gene editing. The commission will rightly solicit public input.
We are at a critical juncture: we must ensure that genetic technologies are deployed in ways that align with our responsibilities as stewards of the Earth and our desire to improve human lives. For that to happen, scientists, bioethicists, policymakers, and world citizens must work together. Can we get agreement on that?
Carolyn Riley Chapman is a postdoctoral fellow in the Division of Medical Ethics at NYU School of Medicine. She received her PhD in genetics from Harvard University and a MS in Bioethics from Columbia University. Twitter: @CarolynRChapman.