Tuesday, May 17, 2011

Helen Mayberg: A case study in why we need greater transparency about conflicts of interest

A year ago, the Department of Health and Human Services proposed new rules governing the disclosure and handling of financial conflicts of interest by medical researchers who receive federal funding. The more stringent rules were prompted by Congressional findings that prominent NIH-funded researchers had failed to disclose significant consulting and other income, violating the agency's own regulations. The new rules would, among other things, require universities to post on a publicly available website information describing the specific financial conflict of interests of their federally funded researchers, according to Sheldon Krimsky, the Tufts University ethicist who wrote about the new rules in an article for Ethics in Biology, Engineering & Medicine last year.

Why is this so important? Because the current system of disclosure has proven woefully inadequate in providing consumers with information about financial conflicts that can skew medical research and adversely affect patient care. According to a 2008 Inspector General's report, the vast majority (93 percent) of institutions reporting conflicts of interest to the NIH did not describe the nature of their researchers' conflicts; in addition, 90 percent of the universities relied solely on the researchers' discretion in reporting conflicts, which is why there was so much failure to disclose in the first place.

Here's an interesting case in point. Dr. Helen Mayberg, a neurologist at Emory University School of Medicine, has testified in more than 50 death penalty cases, always for the prosecution in an attempt to discredit any mitigating evidence of brain damage in defendants on death row. Indeed, in a 2009 transcript (State of Connecticut vs Richard Roszkowski), Mayberg acknowledged that she has probably testified exclusively for the prosecution in more recent death penalty cases than any other doctor in the country, except perhaps Park Dietz, known by some as Dr. Death for his decades of testifying on behalf of the prosecution in high-profile cases.

While Emory officials say Mayberg has reported her expert witness work to them, they are under no obligation to disclose the full range of her extra-curricular activities to the public under existing federal rules. As a result, very few of Mayberg's colleagues or patients know of her extensive testimony in death penalty cases. And Mayberg goes to some lengths to keep her lucrative sideline out of the public eye.

For example, she had a friend (David Dobbs)* scrub her Wikipedia page of any reference to her death penalty work or her previous failures to disclose other conflicts of interest; here's a more comprehensive earlier version of her wikipedia page pre-scrubbing. I blogged here about Mayberg's collaboration with former psychiatry kingpin Charles Nemeroff and her previous failure to fully disclose conflicts of interest involving her work with deep brain stimulation, a controversial technique for treating depression.

Also missing from Wikipedia is the fact that she has so angered other neurologists with her death penalty testimony that they tried to get her drummed out of the American Neuropsychiatric Association. As one prominent neurologist says, it's not just that Mayberg always testifies for the prosecution in death penalty cases -- in effect, "trying to kill people" -- but that she goes to considerable lengths to rebut defense experts, often introducing inaccurate information and contradicting herself in the process.

"She uses a lot of maneuvers to say that [defense] findings in brain scans are not valid, yet at the same time, she's written articles saying the brain scans are valid," says the neurologist in the Washington, D.C. area who has written extensively about brain damage. "In fact, she uses the same brain scans that she says are invalid in the courtroom to diagnose depression in people whom she then treats with deep brain stimulation."

According to Krimsky, Mayberg's death penalty work is considered a significant financial conflict of interest under both the old and new NIH rules. And if the new rules are adopted, she would not only be forced to disclose the extent of her death penalty work but also the money she makes from it. According to lawyers who do for this kind of work, Mayberg makes as much as $500 an hour testifying for the prosecution in death penalty cases. And since she travels all over the country to testify, including to notorious death penalty states like Texas and Alabama, those hefty hourly fees add up.

In response to my query about how many death penalty cases Mayberg has disclosed since she came to Emory in 2004 and how much money she's made from this sideline, all Emory officials would tell me is that "she reported five instances of expert witness activity in 2009." You do the math.

*Correction: David Dobbs did not scrub Mayberg's wikipedia page; he merely added a link to a feature he had written about her for the New York Times magazine.


Robert Weller said...

Does she have a day job. Does all this testifying leave her any time to teach at all. Has she NOT once discovered in mid-course that the evidence was being wrongly portrayed. Must be great to never be wrong.

Unknown said...

Alison Bass, et al,

Having followed the links (at least the active ones- some are no longer active,) and the next set of links back a few "journalistic" generations to their sources, I find nothing conclusive and little of value leading me toward a version of Dr. Mayberg's reputation that causes me concern. Part of this may admittedly be that I have already been following her DBS work for Treatment Refractory depression closely, and have viewed her more from a scientific research perspective. Among my peers, her credentials and reputation for medicine and research are top-notch.

Having said that, let me say that I nonetheless appreciate your work as well, especially as a fearless skeptic. The reason I found this blog is because I was looking for Dr. Mayberg's biggest detractors and critics. I can only go so far as to say that you and I are in a similar line of work, but suffice to say your work is appreciated.

I think there may have been some misunderstanding from multiple sides and sources, but the recordings simply don't indicate any sort of deceptive intent or tricks, especially on the yet to be published work mentioned. The cat never goes back into the bag willingly. Specifically, the Canadian research with Lazano, et al is exceptionally clean of any influence can I find.

Much of the scientific research done in the US is incestuously tied to business. I think this is because our population is still woefully scientifically illiterate, we spend a staggering amount of money on military, and most importantly- the legislative branch of our government is so intrenched with business that it has been convinced at the point of a Campaign Contribution Check that incest with business is good and proper.

It is my opinion that the ties between money and medical research, which is the heart of the accusations above, only include business when it has no other choice, or serious greed is involved. Forget, if you will, Dr. Mayberg for a moment. Put anyone you like in this position. Her footprint on this technology is rather large, and if you pay attention to the details of the work, it really is beautiful. It is insightful, exceptionally empathic, and based purely on the scientific method.

I will defend your right to criticize and call out those that are morally compromised. I would also like to see you balance such personal disdain with disdain for the political and financial systems modern scientists are forced to work within. It is reprehensible. The Feds (us) need to be behind this kind of research 150%, first because of the suffering it may alleviate, but also as an investment. The return on disability payouts alone would be huge.

If you could get even just 50% of the treatment resistant depressive patients currently forgotten in this for-profit system off of disability and back into to being productive people, the investment is a no-brainer.

After nearly two months of research,email and phone calls to those in the know and poking holes wherever the wood may be weakest, I have put my money where my mouth is. I meet all of the criteria and have offered myself to the pre-screening process and the ten year Emory study currently recruiting patients for DBS for chronic refractory depression. This is important work for more people than you (or I) could possibly imagine.

David Dobbs said...

I have tried several times since 2011 to lodge a comment here correcting the errors made in this post., but my comments somehow never get through. Here's one more try: