Ethical Imaginaries

Is each of us morally obligated to volunteer as a subject for biomedical research? Are we blameworthy if we don't sign up to participate in clinical trials? Of the several proponents of this startling notion, bioethicist John Harris put the case perhaps most forcefully in a 2005 article in the Journal of Biomedical Ethics. He contends that

the obligation to participate in research should be compelling for anyone who believes there is a moral obligation to help others, and/or a moral obligation to be just and do one's share. Little can be said to those whose morality is so impoverished that they do not accept either of these two obligations.

According to Harris, even children (providing they are competent) bear this obligation, via their parents.

In the current Hastings Center Report [subscription only], Stuart Rennie examines this point of view. He surveys three arguments advanced singly or in concert by those who claim participation is a moral imperative:

• the "rescue" argument: if one fails to participate in medical research, one fails to prevent harms and is blameworthy
• the "free rider" argument: we have all benefited from medical research in which others have served as subjects, so have an obligation also to participate
• the "public good" argument: medicine produces knowledge constituting a public good, so civic responsibility compels us to participate in the absence of a valid excuse

Rennie finds multiple aspects of these arguments problematic. First, to say that there are moral reasons for an action does not mean that the action is morally obligatory. Competing social and individual values can, in effect, lead someone not to take the action yet not be worthy of sanction. Further, contributing to health-related research isn't limited to being an experimental subject: Is someone who fails to enlist in a clinical trial but makes a donation to a university for cancer research a free rider? Rennie also suggests that the outcome of the moral obligation argument-near-universal participation in clinical trials-might not be desirable: the number of studies that can go on at any one time does have a limit; if everyone volunteered, the supply of potential subjects would probably significantly outstrip the demand.

Most compellingly, Rennie points out that arguments about moral obligation presume, ipso facto, that health-related research redounds to the public good without recognizing that a long shadow falls between the ideal and the real.

For example, some health-related research-and particularly some pharmaceutical research-is not geared toward reducing significant morbidity and mortality in vast numbers, and its choices of research questions and investments may serve corporate interests rather than (or at the expense of) public interests.

As we know well, some research is useless as conceived and/or executed, and some is useful. But scientists and funding agencies often can't tell in advance which is which. Rennie writes, "Establishing criteria for determining the 'importance' of health-related research is no easy task: should we understand it in terms of health indicators and outcomes or in terms of other measures, and if so, which ones?"

Even supposing that we make the most minimal demands with regard to "importance," the argument for moral obligation looks shaky on other grounds. Working with the Indian diasporic community in Houston, anthropologist Deepa Reddy notes a problematic disconnect between the expectations of people giving blood for a genetic database and the practices of the labs and scientists that were the ultimate recipients of those samples. In this case, the subjects themselves conceived of their donation as having a moral justification.

Reddy, reporting on her work in the online version of the journal Cultural Anthropology was

struck by how often a particular kind of gift, the donation of blood for the purposes of genetic research, is applauded and justified in the name of 'the community,' 'the good of humanity,' 'the greater good,' and even more generally, 'a good cause.'

The donors saw any risk as justified by the medical or scientific knowledge that would be gained, and, in fact, did not concern themselves with the specifics of how their blood would be used by the researchers because they imagined that they were participating in a shared community of values in which a gift given would continue to circulate. In effect, they tacitly assumed that researchers would not ask for the gift unless they, too, were committed to the betterment of people's lives.

But, regardless of the subjects' lack of concern, bad faith underlay this transaction to some degree. Reddy writes:

In the donor imaginary, blood moves from the veins of the local/moral into the spaces of the ethical/abstract, the unknown, largely unfamiliar, and almost wholly speculative spaces of scientific discovery. Less visible from that perspective are the conceptual, procedural, and legal redirections of "blood" flow into other circulatory systems that channel and filter and pump it in all manner of predictable yet unforeseeable ways, through repositories and research labs, into the speculative economies of intellectual property rights.

Given the market constraints under which science operates, the freely given gift quickly becomes commoditized.

In this sense, Reddy views the practices and procedures meant to satisfy bioethical standards (informed consent documents and community consultations) as "the price paid...to grease the nonmonetary aspects of the transaction. 'Ethics' justifies the taking of blood by imbuing it with ethical provenance, and opens the possibilities of research and of all the monetary and nonmonetary benefits that could then accrue." Ethics becomes not an end in itself, rather a means to avoid controversy (such as that surrounding the Human Genetic Diversity Project and the taking of biomaterials from indigenous peoples).

Arguments regarding moral obligation assume that it is possible to create a hierarchy in which some moral actions are more important than others. They also, it seems, too often proceed as if moral choice exists in some time-space continuum where people do not lead complex lives with finite hours in the day and competing moral responsibilities. It's difficult to imagine how biomedical research counts as worthier than a whole range of other actions that real people feel it important to take. Is a person who has to work eight hours a day and then shop for, bathe, dress and feed an aged parent, as well as share responsibilities for her own household blameworthy for not making the time to participate in a clinical trial?

Rennie also points out that power relations go largely unexamined by those proposing a paradigm shift that would make participation obligatory.

It is probably no accident that calls to change the moral status of research participation come at a time when health research is increasingly being outsourced and offshored around the world: relocating research in lower-income countries and framing research participation as a robust duty are mutually reinforcing ways of enhancing power and profitability. So at least in the short term, the chief beneficiaries of calling research participation "obligatory" are researchers, research institutions, public and private research funding agencies, and pharmaceutical companies.

Previously on Biopolitical Times:

• Are We Protecting Human Subjects?
• No More Guatemalas
• Research Ethics at Minnesota
• When Cultures Collide