“My central claim is that American bioethics is not simply the application of universal moral principles to scientific progress. It is better understood as a historically produced ethical regime: an institutionalised governance formation that defines what counts as an ethical problem, who has the authority to define it, and what kinds of solutions are considered legitimate,” said Sandra Soo-Jin Lee of the Department of Medical Humanities and Ethics at Columbia University.
“My book project American DNA examines bioethics as an object of anthropological analysis, a field of inquiry and practice that is culturally embedded, shaped by specific political and social conditions, and inseparable from the values that influence the production and application of scientific knowledge.”
“This book project is a work in progress and I’m hoping to catalyse conversations while at STIAS,” she added.
Lee began by emphasising her positionality – “I’ve spent three decades inside bioethics institutions, inside the rooms where ethical problems are named. prioritised, debated and addressed. This work reflects my straddling anthropology and the field of bioethics which have been in tension historically. I’m trying to create a bridge between these worlds.”
Lee explained that since the completion of the Human Genome Project, the US has made significant public and private investments in collecting biospecimens and genetic data from historically underrepresented populations in pursuit of personalised genomic medicine. These initiatives have generated research extending well beyond disease to the history of human migration, genetic ancestry, and socio-behavioural traits, such as intelligence, aggression and creativity. “As the human genome has become a site of contestation and struggle over issues of identity, power and governance, the field of bioethics has assumed a central role in adjudicating the moral boundaries of genomic research, raising fundamental questions about what constitutes ethical science.”
American DNA draws on three decades of ethnographic immersion in genomic studies, public-private partnerships, consumer genomics, advisory boards and policy debates that have shaped the genomic age. Through interviews, archival research and participant observation across these sites, Lee traces American bioethics not as a neutral moral philosophy but as a governing architecture that determines whose bodies are studied, whose harms are recognised, and whose futures are imagined. Building on anthropological theories of how power shapes knowledge and governance, she argues that bioethics is far from a universal moral language. “It constitutes an ‘ethical regime’: a distinctly American formation whose cultural particularity, rooted in liberal individualism and market logics, translates ethical concerns into regulatory frameworks, expert vocabularies and institutional procedures Bioethics has not merely responded to genomic science. It has actively participated in producing its moral terrain, shaping what counts as an ethical problem worth solving, how responsibility and benefit are defined, and whose lives are rendered visible or invisible.”
Learning from history
Among the studies Lee described was the infamous 40-year (1932 to 1972) Tuskegee Syphilis Study run by the US Public Health Service and the longest non-therapeutic study in US history that involved 600 impoverished black men. “We must disabuse ourselves that this was conducted in secret,” she said. “Study findings were published in high-impact journals and made people’s careers. The exploitation of black bodies was simply not seen as remarkable.”
A consequential legacy of the study was the 1979 Belmont Report which established foundational ethical principles for human-subject research. Lee explained that the report identified three principles – namely respect for persons, beneficence and justice. However, the report focused on procedural mechanics such as institutional review boards and informed consent, without confronting the deeper architecture of racial logic that made the study possible. “It excluded understanding of the institutional decisions about what to fund, the racial logics that make certain communities perpetual targets for scientific enquiry and the conditions that make such research possible in the first place.”
Lee emphasised that such logics are not just in the past. The Violence Initiative was a project proposed by Frederick Goodwin (director of the US National Institute of Mental Health) in 1992. It was a sweeping proposal to identify biological markers of violence in inner-city children as a basis for early intervention. Making analogies between black children and primates, and urban environments and jungles, Goodwin remarks reflected a sociopolitical context in which violence, race and genetics converged, and revealed the limits bioethics to address logics embedded in the assumptions of research questions.
Although terminated, Lee pointed out that the initiative never underwent IRB review or ethics consultation when conceived. “It therefore gives us clues as to how ethics functions and need for a more capacious approach to ethical governance of public science,” said Lee.
A related controversy in mid-1990s involved the use of the drug fenfluramine on aggression. The study recruited, the younger brothers of convicted criminals identified by sealed court records and excluded white children. Although the institutional review board removed the racial exclusion criteria, the study population remained 97% black and Hispanic. Without scrutinizing the underlying racial assumptions for study recruitment, “procedural compliance can coexist alongside substantive injustice,” said Lee.
And as recently as January this year, the New York Times revealed that the National Institutes of Health failed to keep data safe in the Adolescent Brain Cognitive Development Study, a long-term study on the impact of DNA on behaviour and disease. This resulted in the misuse of confidential data from 20 000 children by ‘fringe’ researchers to produce academic papers purporting to find biological evidence for differences in intelligence between races and ranking ethnicities by IQ. Some of these papers have subsequently been cited by AI bots like ChatGPT and Grok as authoritative sources.
Taken together, Lee pointed out that these cases and other examples point to a collision in which institutions make “moral decisions based on their own interests and maintaining the integrity of the research enterprise instead of attending to justice. We need new mechanisms,” she emphasised.
Toward a different architecture
Drawing on the work of anthropologist Aihwa Ong, Lee argued that understanding bioethics as an dynamic assemblage of components: principles, institutions, markets, legal frameworks, and expertise. These are not static systems and components can be rearranged, But, she pointed out ethical regimes change with changing conditions. “Ethical regimes should not be understood as a fixed architecture but must be recognised as a contingent formation,” she said. “Ethical regimes are contingent assemblages not coherent systems.”
“I hope we can move beyond merely a culturalist framing to taking seriously institutions as moral actors,” said Lee. “And reimagine what we are currently seeing in the US context.”
And if we had the willingness to go beyond the existing framework, Lee highlighted five dimensions of institutional morality she believes are vital: holding funders, universities and journals accountable as moral actors, not just passive gatekeepers; evaluating the premises of research, not merely its procedures; attending to the political economy that determines what research gets funded and by whom; addressing the structural conditions that produce vulnerability in the first place; and expanding the ethical lens to encompass collective and intergenerational harm, not just risk to individual subjects.
Lee noted that often scientists will respond to ethical questions about research supporting racist practices and findings as ‘bad science’, however, she emphasised that while “ensuring scientific rigour and validity are critical, these are not a substitute for confronting the ethics of asking the racist research question in the first place. Academic freedom has been used to justify racist research. We must delve into the meaning of academic freedom and scientific autonomy”.
“The first step is to render visible how ethical governance operates as a way to move forward,” she concluded.