Innovation and equity in an age of gene editing

The first day of BEINGS2015, “A Gathering of Global Thought Leaders to Reach Consensus on the Direction of Biotechnology for the 21^st Century”, in Atlanta, coincided with the announcement by the National Academy of Science and National Academy of Medicine of an initiative to look into “promising new treatments for disease,” given that “recent experiments to attempt to edit human genes also have raised important questions about the potential risks and ethical concerns of altering the human germline.”

It is the time of prizes and tussles over intellectual property and experiments on non-viable human embryos, and, calls for caution from CRISPR-CAS9 scientists (here and here and here). Also still in the air is the UK’s political vote, despite an EU consensus against germline genetic modification (was this the first step of ‘Brexit’?) to allow clinics to apply for permission to undertake IVF with mitochondrial DNA donation, a form of germ cell genetic modification that requires egg donation. These technologies are widely considered threshold technologies with unknown and irreversible consequences for individuals, humanity and the environment.

During the first day of BEINGS2015, it was clear that there was a division in the room. Yesterday’s National Academies framing morally centered “promising new treatments for disease” and pitted “risks and ethical concerns” against those potential treatments. This framing was echoed in some participants’ comments and questions. On the other hand, there were others in the room, ourselves included, who argue in our work that “promising new treatments for disease” should not be pre-emptively morally centered, as to do so leaves out too many of the ethical issues at stake. As we pursue promising treatments, we should also be asking what we are trying to treat; whether it is best treated biomedically; who is included as funders, patients, donors, and scientists; who is left out; who profits; and whether or not the treatment masks, depoliticizes, or exacerbates political and social inequality.

Cures are often wonderful, but not everything can or should be cured, as scholars in disability justice have taught us. Many of the worlds’ greatest medical challenges stem from poverty, inequality, discrimination, pollution, and environmental devastation, as critical race, gender, and decolonization scholars have shown us. Medical interventions in another country do not help in the long run if the country gets no richer and if the intellectual property is not indigenized, as scholars of least developed countries have shown. The life sciences, and not just the physical sciences, develop technologies that are weaponized.

Let’s progress with cures, but let’s do so with as much innovative thinking about prevention, access, affordability and alternatives to biomedical cures as we put in the search for cures. Let’s be alert to the ways in which risks and ethical issues present themselves at every stage of developing and implementing promising new treatments. Scientists themselves do not have to do this work. That is what social scientists do. We can work together. All it takes is some reframing. A treatment that takes its subjects and their living conditions and life stories seriously is likely to be more effective as well as more equitable. It is time to start developing, measuring and acting upon social innovation as well. After all, major indices from the WHO and OECD suggest that mitigating extreme inequality, discrimination, violence, and exclusion ̶ rather than medicalizing their impacts ̶ leads to better overall health.

We should end by saying that we adamantly refuse the idea that because we believe social justice should always already be part of how we think about these technologies, we must somehow be anti-science. We are not anti-science. The science in question is truly exciting, both as fundamental discovery and for its potential applications. But it must be held to account on matters of social justice. This is not to impose an undue regulatory burden, or to widen the ethical focus so far that all hope of measurable ethical scrutiny disappears. To the contrary, we believe that better social justice, in the case of science based on human-derived cell lines, produces better science.

Charis Thompson is Chancellor’s Professor of Gender and Women’s Studies at Berkeley and Professor of Sociology at the London School of Economics. She is the author of Good Science and Making Parents. Ruha Benjamin is an assistant professor at Princeton University specializing in the interdisciplinary study of science, medicine, and biotechnology, race-ethnicity and gender, health and biopolitics. She is the author of People’s Science. Jessica Cussins is Project Associate and Marcy Darnovsky is Executive Director at the Center for Genetics and Society in California.