How was it listening to Dr. Massie’s plenary session at the 2015 AER Conference (AER15)? It was like sitting in a cozy room, warmed by a glowing fire, catching up with a too-long-out-of-touch dear friend. Bob Massie is a magical storyteller. Describing in measured tones, touched with a tinge of irony a life challenged by health issues both genetic (hemophilia) and manmade (infection with HIV and Hepatitis C from a tainted blood supply), he painted dozens of tender, amusing, frightening pictures of a life lived, delayed and nearly lost, and finally found again.
As a PRIM&R member and IRB vice chair, one of the stories that intrigued me was his description of his relationship to research and researchers, and how that connection informed his life as a patient and research subject. His remarkable fearlessness about HIV and stigma in open participation HIV studies was evident. In fact, he describes searching for clinician-researchers who might want to understand (as he himself wanted to) his remarkable wellness after 20 plus years of HIV.
Through participation in a study of hemophilia, his blood samples had been stored from back into the 1970s. No details were presented about the consent process from that time, but after his diagnosis of HIV in the early 1980s, analysis of those samples confirm that he was infected in 1978. Clearly the connection to his personal identity had not been masked in that early biobanking of samples. With this longevity in his mind, he presented himself to clinicians at Massachusetts General Hospital in the early 2000s for an evaluation of his health in the face of so many others who had died from HIV. And he offered to become a subject, or more accurately an active participant for yet unplanned studies to learn more about his body’s unique immune control. In an interview with Massie entitled “What It Means to be Human” published in the Princeton Alumni Weekly (PAW) in June, 2005, Dr. Bruce Walker was quoted as saying Massie was indeed the sentinel case of a person whose immune system had the ability to keep the HIV virus in check.
During his keynote address at PRIM&R, Massie talked about how carefully the investigators tried to explain what they were doing to him and what it meant. He also noted the reams of paper he filled out, saying there is “probably a room at Mass General filled” with his forms. Were these lengthy, dense, consent forms clarifying his lack of benefit from future discoveries like vaccines or describing the severe risk of loss of confidentiality for those facing HIV discrimination? Not commented on, but one can imagine what those informed consent papers might have described. Though researchers labelled his many samples with his study ID only, he openly referred to himself then and now as 161J. So whatever privacy he might have desired at the time, he indicated in the 2005 PAW interview that he was clearly willing to be open about his identity, and endorsed his willingness to have his samples sent to labs throughout the world.
Another interesting research-related comment was about the lack of return to scientists for their discoveries in research. While he didn’t begrudge the gains to companies from the discoveries made on his samples, he commented that it seems wrong for a person who has made the discovery to see none of the financial benefits come back to support their career of ongoing research and creative work.
One is that it is impossible to call this man a “subject” and not a “participant” in research. Massie epitomizes the partnership—even friendship—he developed with the Mass General scientists who he refers to by first name; who stopped at his house to draw samples; who invited him to their house to mingle with Fellows and students. He sought out people to understand his immune system. You don’t get more participatory than that.
Finally, those freezers full of blood and tissue samples do have individual and societal value that cannot be imagined at the time they are gathered. While it feels too late to reverse the trend now, since every other study drawing blood at our institution seems to include the disclaimer about de-identifying data, there is a serious need to maintain an identity link that can be retraced. Effort should be made to keep an active link to participants when studies end. Robert Massie is the face of why this is an important effort to be considered.
Jacqueline Tulsky, professor of medicine, emeritus at the University of California, San Francisco, is a member of the PRIM&R Blog Squad for the 2015 AER Conference. The PRIM&R Blog Squad is composed of PRIM&R members who blogged here, on Ampersand, to give our readers an inside peek of what happened at the conference in Boston, MA.