Although tremendous advances in research and medical ethics have been made since the mid-20th century, questions continue.
The author of a recently published book questions ethics of research involving one of the best-known neurology patients, evoking a passionate response from both the public and the research community.
The positive impact of medical research on the quality of life today is undoubted. Along with the victories, medical research had its failures, such as devastating consequences of early-day psychosurgery, but lessons from these early failures contributed to success of modern research just as much. The case of Henry Molaison, formerly known as Patient H. M., is one of such therapeutic failures that taught us so much. Breakthroughs in understanding of memory aside, an important lesson learned from this and similar cases was that of ethics. Although tremendous advances in research and medical ethics have been made since the mid-20th century, it continues to be questioned. Most recently, the issue came up in Patient H.M.: A Story of Memory, Madness, and Family Secrets, a book by Luke Dittrich.1
Briefly, in a fragment of his book published in The New York Times Magazine, Dittrich suggests that Suzanne Corkin, PhD, a researcher who dedicated her life to studying Patient H. M., destroyed research data, opposed publication that could question the validity of her work, and violated research ethics principles.2 The fragment and, shortly after, the book evoked a range of responses from the public, research community, and the Massachusetts Institute of Technology, where Corkin conducted her research.
The public found Corkin’s actions, as described by Dittrich, disturbing, judging by the comments on The New York Times website such as “Dr. Corkin comes across as evil!” Many were convinced by Dittrich’s story, which he, as a journalist, so skillfully tells. (I was unable to confirm whether Dittrich has any medical or research background.) In a follow-up interview to The New York Times, Dittrich shares his reasons for telling the story: “I believe Henry’s story is important … because of what his case can teach us about our sometimes ruthless pursuit of knowledge.”3
Even if we assume for a second that Corkin indeed pursued her research interests ruthlessly, this lesson has been learned many times over, and multiple measures are now in place to minimize the risk to research participants. Thus, Dittrich’s motives for telling his version of this story are unclear to me, as is its educational value. In fact, his mention of “researchers who’d built their careers on [Henry] and who had an interest in presenting his story in a particular way” made me wonder about Dittrich’s interest in telling the story in the way he does.
Unlike the public, I was not disturbed by Corkin’s actions because I am familiar with research practices. I found her actions not only acceptable but perhaps even appropriate, and my opinion echoed that of the research community’s.4 As I am not currently involved in research and do not represent interests of any research institution, my opinion lacks bias the public might suspect in opinions of researchers.
What I did find disturbing was the fact that the book was published shortly after Corkin’s death, when she could no longer defend her work and remediate the damage the book did to the public perception of research. I was very pleased to see the research community take on this role by sending an open letter to The New York Times.5 As long as journalists with little knowledge of research practices feel the need to tell their stories, researchers must continue to tell theirs to help the public to form an educated, unbiased opinion.
1. Dittrich L. Patient H.M.: a Story of Memory, Madness, and Family Secrets. New York: Random House; 2016.
2. Dittrich L. A brain that could not remember. The New York Times Web site. http://www.nytimes.com/2016/08/07/magazine/the-brain-that-couldnt-remember.html?_r=1 Accessed October 16, 2016.
3. Carey B. A Brain Surgeon’s Legacy Through a Grandson’s Eyes. The New York Times Web site. http://www.nytimes.com/2016/08/09/health/brain-patient-hm-book-dittrich.html Accessed October 16, 2016.
4. Hurley D. New allegations in book about patient HM kick up controversy on medical, scientific ethics. Neurology Today. 2016;16(19):48-50.
5. International Community of Scientists. Letter to the Editor of the New York Times Magazine. The MIT Department of Brain and Cognitive Sciences Web site. https://bcs.mit.edu/news-events/news/letter-editor-new-york-times-magazine Accessed October 16, 2016.