Unheard Publics in the Human Genome Editing Policy Debate

Biopolitical Times
The American and British flag are super imposed on each other, diagonally divided. The American flag appears on the left side, displaying the blue rectangle with stars and a few red and white stripes that are then interrupted by the right bottom half of the British flag.

Though the CRISPR-Cas9 genome editing platform is only some four years old, universities and industry are racing forward with a range of research projects, including in human embryos. Given the speed of uptake, and the recent approval of non-clinical experiments with embryos in a number of countries, many are wary of this kind of CRISPR research because it could so easily pave the path to high-tech fertility clinics vending eugenic upgrades.

A vast diversity of publics, communities, and stakeholders are deeply concerned about this prospect of heritable human genetic modification. Yet, a recent comment in JAMA Forum by Eli Adashi seeks to funnel this textured landscape of opinion into a tale of two cities in an international biomedical arms race in which the American research establishment is falling behind.

Adashi frames this battle royale as "Divergent US vs UK Human Embryo Research Policies" in light of the HFEA's decision to license Kathy Niakan's CRISPR research with viable human embryos. (Her research program has yet to begin. It recently received a second round of ethical approval to use surplus embryos from IVF clinics, but those may take months to secure.)

On one side, Dr. Adashi places a mostly British cohort of pioneers, including two groups of research charities and stem cell researchers that have separately gone on record advocating for clinical research into genetically modifying embryos for human reproduction, once certain thresholds are met. He writes:

Many UK scientists quoted in the lay and professional media welcomed the HFEA decision. Professor Sir Robert Lechler, MB, ChB, PhD, President of the UK Academy of Medical Sciences, offered that “studies such as [that proposed by Dr Niakan], that focus on asking basic questions about human-embryo development, are needed to help answer the many scientific and ethical questions remaining in this field.” Similar sentiments were echoed by other UK-based groups, including the Hinxton Group, an international consortium on stem cells, ethics, and law, the Wellcome Trust, an independent global charitable foundation dedicated to improving health, and the Medical Research Council, a leading funder of medical research. Some prominent US scientists also spoke approvingly of such work going forward.

On the other side, he places two lone voices termed “bioethics groups,” CGS included, whose concerns are vaguely glossed:

In contrast, some bioethics groups on both sides of the Atlantic criticized the HFEA’s action. Marcy Darnovsky, PhD, executive director of the Center for Genetics and Society, in Berkeley, California, warned that genome editing poses “dire safety and societal risks.” Calum MacKellar, PhD, of the Scottish Council on Human Bioethics, in Edinburgh, said that “allowing the gene editing of embryos opens the road to genetically modifying all the descendants of a person as well as full blown eugenics which was condemned by all civilised societies after the Second World War.”

A good number of bioethicists have spoken up in the human gene editing debate to voice concerns around informed consent of future generations, the sharing of risks and benefits, and the distributional justice problem of inequitable access to genetically enhanced reproduction. CGS' concerns with heritable genetic modification include those and others: they extend far beyond problems inherent to the individual doctor-patient relationship. As a public interest organization advocating for human biotechnology to serve the common good, we are deeply concerned about the social justice implications of moving forward with the human re-engineering project of germline gene editing under the mislabeled auspices of medicine and science.

What's on the international policy table is the potential creation of genetically modified humans. The substantive issues at hand strike at deeply held values across nations and cultures, including commitments to social justice, human rights, and the public interest. Yet many aspects of the futures that CRISPR would enable, and of the context of unprecedented health and wealth inequalities in which it would be deployed, are not being discussed democratically.

Who is most vulnerable of being “edited out” of future generations, and why aren’t their voices at the policy table? Groups and voices dangerously under-represented or missing in these conversations include those under consideration for editing: disability rights and justice, racial justice, reproductive rights and justice, public health, global health, environmental justice, religion and spirituality, LGBTQI rights and justice, and indigenous rights and justice. How would the unquantifiable lives and interests that these voices represent be affected by the fantasies and projects of a technology-enabled-and-optimistic few?

Recent public opinion studies show that a majority supports the development of accessible gene therapies for consenting patients. By contrast, the polled public is overwhelmingly opposed to genetically modifying human embryos for reproduction.

The history of eugenics and its goal to competitively optimize human reproduction is a century-old, and deeply fraught, enterprise. Without a federal law banning human germline modification, the United States is vulnerable to private interests moving forward uninhibited. This could usher in a new form of high-tech eugenics that would exacerbate existing inequalities, and create new forms of discrimination. We cannot proceed with germline interventions for human reproduction without imperiling the existence of a just and sustainable world for future generations.

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