Medical Research Subjects: Guinea Pigs, Laborers, Or Altruists?

Guinea pig wearing nurses hat

Guinea pig wearing nurses hat

Cari Romm has a great article in The Atlantic, The Life of a Professional Guinea Pig: What It’s Like To Earn A Living As A Research Subject In Clinical Trials. (HT: Jamie Boyle)

I’ve blogged before about my course on Taboo Trades & Forbidden Markets (see here for course resources, including reading lists, blog posts, and the like) and for the past several years have included readings about the market for professional research subjects. Last year, for example, I assigned this New Yorker article, Guinea Pigging, by Carl Elliott, together with More Money, More Problems? Can High Pay be Coercive and Repugnant?, by Sandro Ambuehl, Muriel Niederle, and Alvin E. Roth, and Martha Nussbaum’s, Taking Money For Bodily Services, in SEX AND SOCIAL JUSTICE.

I’ll certainly be adding Romm’s article into the mix in future years. The piece hits on two points that I have tried to make in various works on taboo trades, particularly human egg markets. The first is that attempts to keep payments low, out of coercion or other fears, does not necessarily result in altruistic donors. Instead, the result is often that donors with higher opportunity costs and better income opportunities exit the market, leaving behind “donors” who are poorer, potentially less educated, and more in need of money to meet basic needs. In other words, precisely the donors least likely to thoughtfully weigh the risks of donation against the monetary benefits and most likely to succumb to the “coercive” effects of money, because they have fewer income opportunities from which to choose. Second, pretending that donors are altruists, rather than sellers or wage earners, deprives them of legal protections and, sometimes, legal obligations.

'You mean you're going to do a test on a guinea pig now?'

‘You mean you’re going to do a test on a guinea pig now?’

I discuss both of these issues in a recent article in the Journal of Applied Philosophy (the article is gated, but you can access an earlier draft on SSRN). As I state there:

The provision of human oocytes for third party reproduction (“egg donation”) has long been contested territory, sitting uncomfortably between the world of gift exchange and its crass cousin, the marketplace. . . .

[Yet] egg donation is a thriving and profitable industry, a substantial source of income for many young women, and the most important purchase that intended parents will ever make. In other words, it is a market, and well-established social policies seek to address a variety of concerns with respect to all markets. Among other goals, the legal regime governing markets seeks to control collusive economic activity and rationally tax income-generating activities. Those goals are in direct conflict with the [litigation discussed here, namely collusive price controls and challenges to ambiguous and inconsistent tax policies]. . . .

Together, these cases demonstrate the difficulty of achieving in practice what has seemed so appealing to many in the abstract – a mechanism that harnesses the market’s incentivizing forces while at the same time preserving ideals of reproduction and parenthood as outside of the marketplace. . . . A close examination of these cases also provides lessons on the dangers of romanticizing what is, for better or worse, a highly profitable and robust industry.

The Atlantic, quoting Carl Elliot, sums up these issues well in the context of medical research subjects:

“Under the basic ethics guidelines … research subjects are treated as if they are altruistic volunteers,” he [Carl Elliot] told me. The issue of payment for research participation is an especially complicated one, and the pretense of altruism acts as a hedge against accusations of unethical behavior. “You have to ask: Who has a month or three weeks to just check in to a trial site or live there for that amount of time?” he said. “Homeless people, undocumented people, people who are either temporarily or long-term unemployed, people who are out of jail who can’t get regular work.” Paying members of vulnerable groups to put experimental drugs in their bodies can seem dangerously close to coercion.

But treating money as an afterthought rather than the main motivator also means that guinea pigs aren’t considered employees. “It’s work, but it offers none of the protections of work,” Elliott said. “You don’t have the right to minimum wage, you don’t have the right to unionize, you don’t have disability payments, you don’t even have regular health and safety inspections.”

Read the full Atlantic article here. And definitely read my full article on egg donation here. 🙂

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