Ethics in Genome Diversity Fieldwork
In moving from lab to field, human geneticists can, one hopes, seed important understanding among layfolk. But research-associated ethical questions become more urgent and complicated for scientists who venture from their lucite harbors into the open sea of humanity, with its historical depth, cultural waves, storms of conflict, and currents of power. Each stage of such research brings decisions with implications — big or small — for the lives of individuals we study, for those we collaborate with, and for future relations between locals and outsiders in the places we visit.
Considering these implications on the fly, our team members often have differing takes, emphasizing that, like anything else, doing science can get bogged in murky ambiguity. Here’s an example of how cultural differences, societal power dynamics and other factors come together to challenge our consciences:
In a Baku tuberculosis clinic I was taking mouth swabs for Y-chromosome analysis by U.K.-based collaborators. In sampling, we record donor ancestry and life history data — crucial for population-level genetic analysis. Our blood sample data includes names of donor and parents, partly to ensure that we don’t include close relatives in our database, but also for ethical reasons described below. But our mouth swab collaborators omit names (also for ethical reasons below), so in these interviews I wasn’t taking them. Ruslan Ruzibakiev, a physician member of our expedition team, noticed this and, thinking I’d forgotten to get the information, interrupted to ask a donor’s name. I intervened to keep the donor anonymous: ‘No, we don’t need names for cheek swabs.’ Dismayed, Ruslan explained that most Azeris found it rude to not even be asked their name while participating in a study in a medical setting. My well-meant concern for anonymity was, to people helping us with trusting generosity, callous and impersonal objectification. From then on I asked names, even without recording them.
Beyond cultural attitudes, approaches to gathering personal data vary themselves, despite international standardization efforts. Procedural debate centers on how best to ensure that 1) potential donors make free and informed choices about study participation and 2) they suffer no repercussions for their decision. Protecting donor identity is considered crucial to the latter, preventing harassment or punishment by those opposed to participation. But as a paper trail of informed consent (and to reduce the likelihood of data falsification), donor’s names are often recorded. Such records — legally accessible only to donor, researcher and ethics investigators — could of course fall into the wrong hands. Thus researchers are divided on confidentiality versus anonymity of donors as the best approach.
For ethnicity, we try to abide by self-designation, i.e. people’s conception of their own group ancestral identity. But this doesn’t always yield the ancestral information we want, due to another culture clash: ethnicity translates poorly to Russian (and Farsi). In the Soviet world, nationality was the closest concept, carved hastily from a diverse cultural landscape. Touting yourself as a member of an unrecognized or locally disfavored group could mean trouble with authorities — a fear that may persist. And while people’s first language may offer some insight, during the Tsarist and Soviet eras, Russian swamped linguistic diversity. So we resorted to listing possible ethnicities to residents of cosmopolitan Baku, for example, who might then intuit what we were looking for. This multiple choice approach violates the principle of self-designation, but we deem it a necessary compromise.
Our sampling in the TB clinic raises another ethical issue: how we leverage our research’s medical versus anthropological relevance. In most clinics we sample just from healthy staff, for whom a sterile needle prick and 5 ml blood loss mean nearly zero risk. Occasionally, though, we sample patients. We always carefully assess whether sampling presents health risk or scientific data bias, and err on the cautious side. But with patients the question of free and informed consent is complicated: despite the best explanation (which we can’t guarantee, as it’s often staff who explain in local languages), they may interpret any sampling procedure as clinical, and thus feel wrongly compelled to participate. And in resource-strapped wards, patients may suspect that their continuing bed and care depend on consent. Similarly, staff may worry that their very jobs depend on giving blood to the strange foreigners — not necessarily an unfounded fear in the highly hierarchical post-Soviet workplace.
And while much of our work’s relevance is anthropological, we often find ourselves trumping its less direct medical promise. Dodging traffic fines, booking air and ferry tickets and introducing selves and work to others, we’ve found magic words in doctor and immunogenetics. Rationalizing this as spin doctoring to save bureaucratic hassle, we may misrepresent our strongest interests. Conversely, many rural Kazaks we met were more interested in anthropological insight into their own history than in medical explanations of our work (which may have raised suspicions of unknown local environmental health risks), leading us to shift approach again. Such chameleon strategy may be inevitable in seeking help from strangers; is it unethical deceit?
Other questions, such as whether to give trinkets (or vodka) to donors, have provided us some lively discussion. But when the collecting’s done, the use of our results may present our strongest ethical dilemmas. The general lessons of human genetic diversity research — that all people are more closely related than they may realize, that there are no ‘pure’ populations — are already clear. And our work certainly may contribute to medical progress for all our benefit. But hatemongers may eagerly distort results from this field in order to foment ethnic conflict. How best to actively counter those voices? And what if our results contradict a population’s sacred folk history; should we try to shield our conclusions from them in choosing a journal for publishing, or should the marketplace of ideas be as open as possible?
Questions clearly outnumber definitive answers here. Maybe the best reassurance scientists can offer society is that we’re thinking about such issues as we conduct our work. We invite your thoughts.
[This piece, by Nathaniel Pearson, originally appeared in 1998.]