New work on ancillary care responsibilities

Health researchers in low-resource settings -- wherever they are located in the world -- are familiar with the following ethical problem: what if your research participant has a significant health problem that is unrelated or tenuously related to what your research is about? Do you have an ethical responsibility to do something about, and if so, why? Why is it your responsibility, rather than (say) the responsibility of your funder or the local government? And what exactly are you responsible for: giving health advice, giving a referral, or giving medical treatment? If participants in health research were not often poor, or were in better health, or had better access to adequate health care, this sort of thing wouldn't happen. But that is not the world we live in, and so we are left with the ethical conundrum of what is has been dubbed 'ancillary care responsibilities.'

Congolese colleagues of mine and I are convinced that the question of ancillary care responsibilities is a particularly fruitful angle for teaching research ethics in low-resource countries. The topic has a bit of everything, intricately related: the relationship between research and medicine; the problem of undue inducement; community engagement; the roles of research ethics committees; obligations towards research participants versus non-participants; provision of care as obligation versus act of charity; politics of international research priorities; benefiting participants versus concerns about data integrity; the social determinants of ancillary care needs. And so on. Our shared view is that approaching research ethics through the prism of ancillary care rather than the usual approach (history of appalling research abuses followed by discussion of informed consent) is a stimulating and locally relevant option in low-income settings that do not share that history and are not aggressively individualistic. With ancillary care, you can go from very theoretical discussions about the nature of the researcher-participant relationship to practical specifics about what responsibilities may hold for research on a particular condition in a specific setting. And back. A full workout for mind and heart.

The best bioethicists currently working on this issue, in my opinion, are Maria Merritt at John Hopkins University and Henry Richardson at Georgetown University. Merritt has published a number of articles on ancillary care (most recently with Holly Taylor in the Journal of Nutrition) which are models of the best bioethics can offer, both philosophically rigorous and relevant for real world decision-making. Richardson has just published an illuminating, sophisticated, and elegantly written book-length treatment of ancillary care. Critics of bioethics, read them and weep.