This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...) of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

“Informed consent” implicitly links the transmission of information to the granting of permission on the part of patients, tissue donors, and research subjects. But what of the corollary, informed refusal? Drawing together insights from three moments of refusal, this article explores the rights and obligations of biological citizenship from the vantage point of biodefectors—those who attempt to resist technoscientific conscription. Taken together, the cases expose the limits of individual autonomy as one of the bedrocks of bioethics and suggest the need (...) for a justice-oriented approach to science, medicine, and technology that reclaims the epistemological and political value of refusal. (shrink)

In the last few years, justice has emerged as a matter of concern for the contemporary constitution of technoscience. Increasingly, both practicing scientists and engineers and scholars of science and technology cite justice as an organizing theme of their work. In this essay, I consider why “science and justice” might be arising now. I then ask after the opportunities, but also the dangers, of this formation. By way of example, I explore the openings and exclusions created by the recent conjugation (...) of science and justice in the field of personal genomics. Finally, I conclude with reflections on what other forms “science and justice” might take, and what might be gained or lost in fostering them. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S3-S11, March‐April 2022.

Programs, policies, and technologies — particularly those concerned with health equity — are often designed with justice envisioned as the end goal. These policies or interventions, however, frequently fail to recognize how the beneficiaries have historically embodied the cumulative effects of marginalization, which undermines the effectiveness of the intended justice. These well-meaning attempts at justice are bounded by greater socio-historical constraints. Bounded justice suggests that it is impossible to attend to fairness, entitlement, and equity when the basic social and physical (...) infrastructures underlying them have been eroded by racism and other historically entrenched isms. Using the case of Brazil’s National Health Policy for the Black Population, this paper proposes that bounded justice can contribute to justice discourses by serving as a concept, a proffering to a multi-disciplinary conceptual framework, and a potential analytic for those interested in the design of policy, technology, and programmatic interventions towards health equity. (shrink)

On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter's question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support studies of the ethical, legal, and social implications of new advances in human genetics. The Human Genome Project (HGP), by providing geneticists with the molecular maps (...) of the human chromosomes that they use to identify specific human genes, will speed the proliferation of a class of DNA-based diagnostic and risk-assessment tests that already create professional ethical and health-policy challenges for clinicians. “The problems are with us now, independent of the genome program, but they will be associated with it,” Watson said. “We should devote real money to discussing these issues.” By 1994, the “ELSI program” (short for “Ethical, Legal, and Social Implications”) had spent almost $20 million in pursuit of its mission, and gained both praise and criticism for its accomplishments. (shrink)