Research Must Pass an Ethical 'Smell Test'

by Guy McKhann, M.D.

November 2, 2007

In his guest editorial (registration required) that appeared in the Oct. 26 Science, Henry Greely focuses on neuroethics. I applaud this attention. As a scientific advisor to the Dana Foundation, I have watched the Foundation’s involvement with this developing field over the last three to four years. I would like to add some of my own observations to Greely’s excellent comments.

It is extremely important that neuroscientists, both those working in clinical areas and those conducting more basic research, be involved in neuroethics. Philosophers like to discuss “thought experiments” in which some hypothetical situation is analyzed. That’s fine, and it can be an intellectually stimulating exercise. But we in neuroscience face real problems; we don’t have to make them up!

The problems often start with how research findings are presented to the public. I get an overview of this problem every month as we select articles for Brain in the News. We wind up using about one in ten potential stories. Part of the problem rests with investigators who are touting a company, a product or simply themselves. I am sometimes astounded at what prominent scientists will say to members of the media—things they would never say in front of discerning colleagues.

The media are equally at fault. The scientific expertise of many science writers and editors is minimal. Nevertheless they are quick to jump on a flashy story, even though it may be based on just a few cases or be extrapolating basic findings to clinical problems in inappropriate ways.

Another problem exists between patients and physicians with vested interests. Without detailing their involvement, physicians will sometimes recruit patients into studies of drugs or procedures in which they have a financial interest in the outcomes. Gradually this problem is coming under control, but it clearly still exists.

Are these ethical issues? I would argue that they are. Greely emphasizes the impact of neuroscience on society, with which I agree. I would add that the respect and trust for neuroscience and neuroscientists by society is an important part of this equation. If our advances are repeatedly overstated or over-promoted and public distrust of neuroscience grows, then we have only ourselves to blame. David Mahoney, the previous chairman of the Dana Foundation and the person responsible for its emphasis on the brain, had a unique question related to these problems: “Will it pass the smell test?”

Advances in neuroscience can create new ethical problems, or refocus old ones. Take the increasing use of deep brain stimulation as a therapy, for example. It was first used to treat Parkinson’s disease, in which there is background knowledge of the physiology of both normal and abnormal systems for motor control. A stimulator could be placed in target groups of nerve cells. The stimulator would modify the abnormal movements. For carefully selected patients this can be a very successful therapy.

Now some scientists are advocating the use of deep brain stimulation to treat a wide variety of problems including mood disorders, obsessive compulsive disorder and movement disorders such as Tourette’s syndrome. In these situations the underlying brain circuits are far from clear.

Careful selection of subjects, long-term follow-up and caution in making claims of benefit are needed. All physicians know that desperate patients will agree to desperate things. It is our responsibility to be sure that potential subjects understand not only the potential risks and benefits but also the degree of uncertainty associated with a new approach.

A good example of this approach is found in the work of Helen Mayberg, who first used deep brain stimulation in treating a type of depression. Her subsequent studies are carefully designed, with a small number of patients, to define the parameters of treatment and the longer-term outcomes. An integral part of the development of this research is attention to the ethical issues of patient selection and informed consent. The neuroethics community needs models of how to do things right. This may be one.

Guy McKhann, M.D., is professor of neurology and neuroscience at the Zanvyl Krieger Mind/Brain Institute, Johns Hopkins University, Baltimore. He serves as scientific consultant for the Dana Foundation and scientific advisor for Brain in the News.