How Might we Approach Discussions on the Implications of Using Genetic Data from a Human Rights or Social Justice Perspective?

By Alicia Ely Yamin and Jonathan Chernoguz

To complement the Petrie-Flom Center’s annual conference this year, Consuming Genetics, the Global Health and Rights Project at Petrie-Flom (GHRP) convened a small meeting of feminists, students, and other activists. On May 16, Harvard University’s Global Health Education and Learning Incubator , which co-sponsors GHRP, hosted the forum in conjunction with Marcy Darnovsky and Katie Hasson of Center for Genetics and Society (CGS).

Focusing on “Gene Editing, Ethics, Rights and Health Equity Issues,” and in particular the irrevocability of germline gene editing, the meeting began with Marcy Darnovsky, Executive Director of CGS asking, “How might we begin the discussion from [the perspective of] human rights, feminism, equity, and social justice, rather than from the science and biotechnology?”

This question echoed some of those posed during the Consuming Genetics conference, for example, by Jonathan Kahn in interrogating the equivocation of social diversity and empirical diversity in genomic research. 

Indeed, we have a significant historical record of the use of genetics for human rights (as well as the specter of eugenics, of course). In Argentina, the brutal military dictatorship between 1976-84 hatched what has been called the “unprecedented and systematic plan to steal and sell the babies of its victims”. Dozens of young women who were alleged to be “subversives” gave birth in clandestine detention centers only to have their newborn children taken from them and adopted by military families to raise as their own. Genetic matching played a crucial role in enabling investigators to reunite over 120 of these children, or adults, much later, with their biological families. Here, it is important to note that the DNA was evidence of a stolen social identity—which in every individual reflected the broader societal identity that the military was attempting to erase from the nation.

Similarly, in the United States, we have seen the use of DNA in forensic settings to set free falsely accused/condemned individuals—often people of color—and thereby to hold up a mirror for the larger society regarding the baked-in racism of US society, which is embedded in our criminal justice system.

In both cases, the narrative of humanness in human rights is inexorably tied to the social order, which does not mean rejecting the importance of scientific progress, including the rapidly proliferating uses of genetic manipulation. Thus, for example, the UN Convention on the Rights of Persons with Disabilities rejects biomedicine’s individualism that treats disability as individual defect in relation to “species-normality” and locates disability in the interaction between social structures and relations and an array of biological issues. It is when the biological body—or parts or cells (or parts of cells) of that body—are divorced from the location of a social being in race, gender, class relations, and indeed may be used to reaffirm social hierarchies in practice—that advocates for social justice become concerned.

The conversation at GHELI was inspired by the need for broader public awareness and understanding regarding the implications of the rapidly advancing yet distinct genetic technologies, from pre-implantation genetic diagnosis to mitochondrial replacement therapy to the possibilities and risks of gene editing in humans, as well as other species.

Among other things, we concluded that although there have been a great many calls for broader public discussion, and “genetic literacy,” it is not at all clear that those calls are referring to the same degree of meaningful public deliberation necessary to assess both the promises and perils of such biotechnologies. Both students and activists who participated came away wanting to become more engaged and delve more deeply into the intersections of genomics and social justice issues.

 

This post is part of a digital symposium hosted by Bill of Health in conjunction with the Petrie-Flom Center’s 2019 Annual Conference, “Consuming Genetics: Ethical and Legal Considerations of New Technologies.”

Read the rest of the symposium!

 

Jonathan Chernoguz is a contributing writer at the Center for Genetics and Society and a Master of Bioethics Student at the Harvard Medical School Center for Bioethics.

Alicia Ely Yamin

Alicia Ely Yamin

Alicia Ely Yamin is the inaugural Senior Fellow in the Global Health and Rights Project (GHRP) at the Petrie-Flom Center, a collaboration with the Global Health Education and Learning Incubator (GHELI) at Harvard University. Yamin is currently a Senior Scholar in Residence at GHELI, an Adjunct Lecturer on Global Health and Population at the Harvard T. H. Chan School of Public Health, and a Department of Global Health and Social Medicine Affiliate at Harvard Medical School. Trained in both law and public health at Harvard, she has worked at the intersection of the two fields while living abroad in Latin America and East Africa. She is known globally for her pioneering scholarship and advocacy in relation to economic and social rights, sexual and reproductive health and rights, and the right to health.

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