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A Thankless Task: Whistleblowing in Medical Research on Human Subjects

Carl Elliott is Professor in the Center for Bioethics and the Department of Pediatrics, and an affiliate faculty member in the Department of Philosophy and the School of Journalism and Mass Communications at the University of Minnesota, as well as most recent Kluge Center Cary and Ann Maguire Chair in Ethics and American History.
Elliott is the author or editor of seven books, including “White Coat, Black Hat: Adventures on the Dark Side of Medicine” (2010) and “Better than Well: American Medicine Meets the American Dream” (2003).

He is currently working on a book about whistleblowing in research on human subjects, which was the focus of this interview.

Q: Your experience centers on the medical field, and specifically medical research. What have you found the impact of whistleblowing to be in those areas?

A: Pretty minimal, to be honest. Whistleblowers are pretty rare. It’s much more common for medical insiders to keep quiet even when they see research subjects being deceived or abused. When whistleblowers do speak out, they’re forgotten pretty quickly. Even bioethicists don’t pay much attention to them.

Q: What kind of costs do whistleblowers face for coming forward?

A: Well, sometimes they lose their jobs, of course. Very often they’re the object of campaigns aimed at discrediting them and destroying their reputations. Whistleblower protection laws can help prevent some of these things, but it’s much harder to prevent the more subtle costs, such as abandonment by one’s friends and colleagues.

Q: What about benefits, to themselves or the institutions they are blowing the whistle on?

A: There are no real benefits to whistleblowers in human subjects research, other than the knowledge that they’ve done a righteous thing. It’s all risk and no reward. That makes it different from some kinds of corporate whistleblowing, which can result in qui tam lawsuits. In those cases, the whistleblower can sometimes collect a financial reward. Not in human subjects research, though.
The question of benefit to a research institution is harder to parse. One would like to think that it’s in the long-term interests of a research institution to keep human subjects safe. That means listening to whistleblowers and taking their concerns seriously. But the institutions apparently don’t see it that way. Research institutions are generally run by a cadre of administrators, attorneys, risk managers, and public relations specialists who see whistleblowers as a threat. My research shows that almost never do these people do the right thing in response to a research scandal.

Q: What are the incentives in the organization like to keep things quiet?

A: No organization wants to have its dirty laundry aired in public. But in human subjects research the issue goes even deeper, because research institutions are given the responsibility of policing themselves. When abuses of human subjects occur, it’s often not just the researchers who are implicated. It’s also the Institutional Review Board, which has usually given the research a stamp of ethical approval, and a variety of administrators who have minimized or ignored complaints. If a whistleblower is taken seriously, all of those people have a lot to lose.

Q: Can you envision any kind of protections that could be instituted in the medical field that would successfully protect whistleblowers and encourage them to report wrongdoing?

A: That’s a hard one. We could start by extending legal whistleblower protections to those who report abuses of human subjects, but that would only be a start. Real progress will require deeper cultural and institutional changes that make whistleblowing seem less like a professional suicide mission. What potential whistleblowers need – even if they don’t realize it at the time – is solidarity. They need open, visible support from their friends and colleagues.

Q: What do you find the most common motivations for those who blow the whistle in your field to be?

A: Most of them are just trying to do what their conscience demands.