Are we morally obliged to participate in research?

Bioethics debates are often robust, but it’s not every day that they make a reader sick. This was the reaction of Professor Bill Gleason, of the University of Minnesota Medical School, a columnist for the Chronicle of Higher Education. He had just attended a seminar at his university, “Do people have a moral obligation to participate in research?”. The contrarian views of Rosamond Rhodes, of Mt. Sinai School of Medicine, in New York, were so unsettling that he needed three beers to come back to earth.

Participation in research is a touchy topic at the University of Minnesota, after a young man, Dan Markingson, committed suicide  in 2003 during a clinical trial there for AstraZeneca’s antipsychotic drug Seroquel.

However, Professor Rhodes made no concessions to local sensitivities in her presentation, “Why we are all obliged to participate in biomedical research” (quotes taken from her PowerPoint). She believes that the notion of informed consent has to be reassessed because medical progress without clinical trials is impossible, yet relatively few people volunteer.

She proposes a legislation which would require citizens to participate in “some research service every ten years”. “Each individual (or their surrogate) would be free to choose the particular project for research service from among all of the projects listed on a national web‐site for which they meet the selection criteria”.

Does this violate the principle of autonomy? Dr Rhodes says, No, not really. If a person knowingly endorses the principle of research participation, “Compliance, and even compulsory participation, does not violate autonomy because it conforms with the rule that the person legislates for herself”. In effect, she contends, it is similar to an end-of-life directive written when a patient is competent and executed when she is not. 

She concludes: “Being a free‐rider is unreasonable. Therefore, it is fair and just to institute a policy for reasonable research participation so that everyone is compelled to do a fair part in contributing to the common goal.”

The other speakers at the seminar disagreed strongly. And University of Minnesota bioethicist Carl Elliott said derisively, “Only 16 percent of academic health centers in this country will pay the medical bills for research subjects who are injured in clinical trials.  None will pay for lost wages and suffering.  And an ethicist is arguing that we all have a duty to sign up for these trials?  Give me a break.”

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