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.  Read More

World map where continents are in blue pixels

Global Health Justice and Governance: Challenges and Proposals

A panel discussion held this week at Harvard Law School with Professor Jennifer Prah Ruger about her new book, “Global Health Justice and Governance,” with Professor Michael Stein and Petrie-Flom Center Executive Director Carmel Shachar, provided a stimulating space for transdisciplinary discussion of critical justice imperatives in today’s world.

The challenges facing global health justice—from forced displacement, to climate change, to ever-changing technologies and evolving epidemiological profiles—are far too complex for one discipline to explain or resolve alone, which makes these kinds of discussions all the more essential. Read More