Paying to Participate in Genetic Research
How would it — how will it? — affect ethics review of research protocols if research subjects paid to participate? That is, what if research subjects — instead of either volunteering or being paid to participate — paid the researchers? How would that change things? Would that change the kinds of protections offered? Should it?
See this opinion piece from Nature.com: Personal genomes: Misdirected precaution
If anything, personal genomics has rendered this relationship [between modes of producing knowledge and producing economic value] even closer. 23andMe, for example, encourages customers to upload health, physical and lifestyle information, and to participate in genetic research. For the first time, we see research participants paying to be enrolled. (emphasis added)
(23andMe has appeared on this blog before: Want to find out what makes you “stand out from the crowd”? Consider signing up for a research study!)
So does this change anything, in terms of ethics review? Some will be quick to say it shouldn’t: a research subject is a research subject, and all are equally deserving of protections. But I think that’s too quick. Much of our thinking about the protection of human research subjects is rooted in clinical or quasi-clinical settings, in which researchers with a public-good agenda (or even just intellectual curiosity) seek out people to do their research on. In the kind of research being discussed in the Nature article above, it’s the other way around: customers are seeking out 23andMe with their own wants, needs, and agendas.
Now that’s not to say that research ethics in such contexts becomes a case of “buyer beware.” Far from it. Even in the most nearly free markets, consumers deserve all kinds of protections (mostly to make up for very serious information asymmetries). But it’s worth at least considering how research like this puts pressure on our assumptions, by pulling us between two different normative paradigms.