Coming Monday: our discussion the case of a halted international clinical trial in Cameroon.

Almost a month ago, I told you about a pair of new case studies released by The Global Campaign for Microbicides which examine why a pair of pre-exposure prophylaxis (PrEP) clinical trials looking at the effectiveness of antiretrovirals in preventing HIV infection were halted. In that post, I also proposed that we read and discuss these case studies as a sort of ethics book club.
Next Monday, June 15, we’ll be kicking off our discussion of the first case study, “Research Rashomon: Lessons from the Cameroon Pre-exposure Prophylaxis Trial Site” (PDF).

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Familiar themes in a new instance of scientific misconduct: the Kuklo case.

The New York Times has an article about a physician-scientist caught in scientific misconduct. The particular physician-scientist, Dr. Timothy R. Kuklo, was an Army surgeon working at Walter Reed Army Medical Center. He is now (for the time being anyway) a professor of medicine at Washington University in St. Louis. Since the wrongdoing of which Kuklo was accused happened while he was at Walter Reed, the Army investigated.
That investigation “substantiated all the accusations against the physician.”
The Kuklo case has lots of ethical issues we’ve seen before. The New York Times article goes through them for the Nth time. That we’ve seen these same issues in misconduct and “misbehavior” cases on many, many, occasions might make one wonder how scientists, journal editors, and corporate sponsors of research failed to internalize any of the lessons they might have learned from the (N-1) times that came before this one.
After all, they’re supposed to be good at spotting trends in the data.
Among the familiar themes in this case, I notice:

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Ethics and the ‘Oprah effect’.

There’s an interesting piece in the Chicago Tribune on the “Oprah effect”. The upshot is that products or people who Oprah deigns to grace with airtime tend to find enormous public acceptance.
While this is well and good if the product is a novel or the person is a television chef, it’s less clear that the Oprah effect is benign in the case of people without medical expertise offering medical advice.
From the article:

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Trust and accountability in the vaccine-autism wars.

There’s a new feature article by Liza Gross [1] up at PLoS Biology. Titled “A Broken Trust: Lessons from the Vaccine-Autism Wars,” the article does a nice job illuminating how the themes of trust and accountability play out in interactions between researchers, physicians, patients, parents, journalists, and others in the public discourse about autism and vaccines. Ultimately, the events Gross examines — and the ways the various participants react to those events — underline the questions: Who can we trust for good information? and To whom are we accountable for our actions and our decisions? In many ways, it strikes me that the latter question needs more consideration than people typically give it.
The question of trust, on the other hand, is one with which people seem more ready to grapple. The challenge, however, is that such grappling seems more often than not to result in mistrust.

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Are you a scientist or a journalist here? Either way, you’re bound by ethics.

Following up on an excellent post she wrote earlier this month, Jessica Palmer at Bioephemera brings us an update on the lawsuit against Jared Diamond and The New Yorker. You may recall that this lawsuit alleges that a story written by Diamond and published in The New Yorker defamed its subject (and Diamond’s source) New Guinean driver Daniel Wemp, as well as Henep Isum, another man featured in the story but never interviewed by Diamond nor contacted by fact-checkers from The New Yorker. As described in the earlier post at Bioephemera:

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With celebrity comes duties: Jenny McCarthy, Oprah Winfrey, and the ethical burden of a soapbox.

At White Coat Underground, PalMD explores the question of what kind of responsibilities might fall on celebrities, especially those who use their soapboxes in a way that exceeds the tether of their expertise. The particular celebrities under examination are Jenny McCarthy, who has used her celebrity to spread her views on the proper treatment and prevention of autism, and Oprah Winfrey, who has used her media empire to give McCarthy a soapbox with more reach.
Pal writes:

Jenny claims an expertise based on her personal experience. Whether one views themselves as an expert is largely irrelevant, unless others so christen them. In Jenny’s case, various fake experts have helped promote her status as an expert (making her a 2nd generation fake expert?) and she has embraced this status.
Being a public figure confers a certain status in our society, whether or not it should. It gives one great reach and influence. While Jenny’s putative lack of intelligence certainly makes her susceptible to having her status used by others, it does not absolve her of her responsibilities. She has made a conscious choice to use her status to spread a message, and has chosen to listen to some experts over others. The moral culpability is hers. …
When it comes to medical issues, the only thing consistent about Oprah is her own inconsistency. It appears that she christens experts based on her personal preference rather than any objective criteria. This is a problem. Oprah’s influence is inversely proportional to her ability to choose good experts, which is a troubling trend. One thing she is good at is picking a winner; Dr. Phil may or may not be a good therapist, but he’s great TV. Time will tell whether Jenny is equally lucrative, but Oprah doesn’t pick losers, so we’re likely to be seeing Jenny under Oprah’s banner for a long time to come.

Rather than hewing to close to the specifics of Jenny McCarthy or Oprah Winfrey, I’d like to raise the questions more generally:

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Evaluating an article in the Journal of Medical Ethics.

At White Coat Underground, PalMD considers an article from the Journal of Medical Ethics. The article (L. Johnson, R. B. Stricker, “Attorney General forces Infectious Diseases Society of America to redo Lyme guidelines due to flawed development process,” Journal of Medical Ethics 2009; 35: 283-288. doi:10.1136/jme.2008.026526) is behind a paywall, but Pal was kind enough to send me a copy.
Pal writes:

I have a strong interest in medical ethics, although I’m not an ethicist myself. Still, I’m generally familiar with the jargon and the writing styles. This piece reads like no ethics article I’ve ever seen. It is basically an advocacy piece for the concept of chronic Lyme disease, and starts from an entire set of problematic assumptions.

I know very little about Lyme disease, and I have no horse in the race in the controversy about whether chronic Lyme disease exists, if so what it is, and how it might be treated.
I am, however, an ethicist with a strong interest in ethical issues connected to the building and use of scientific knowledge. So I told Pal I’d have a look at the article.
Here’s the abstract:

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