Unsurprisingly, I am not the only one who was motivated by Rebecca Skloot’s The Immortal Life of Henrietta Lacks to think about medical ethics. And many readers might have sympathized with Skloot’s view that Johns-Hopkins had screwed up and exploited a patient. Now the medical establishment takes a stance.
Robert D. Truog, Aaron S. Kesselheim and Steven Joffe, who all work in Boston hospitals, wrote a paper in Science titled “Paying Patients for Their Tissue: The Legacy of Henrietta Lacks“. They conclude:
Although Skloot’s book is moving and compelling, we use caution in using the Lacks example as a model for thinking about compensating patients who provide tissue for research. Although one can point to the many injustices Lacks endured as a poor woman without access to needed medical care, the use of her residual clinical tissue, involving no additional risk or burden to her, does not demand any form of compensation.
Basically the idea is: if your cells were obtained during regular treatment and would have been thrown away if not used for research, you don’t get anything.
Furthermore, compensating such patients may have unintended consequences that could work to decrease the availability of tissue for research, and may paradoxically become a source of injustice.
They give several reasons for this conclusion: First, “it is the investigators, not the patients, whose intellectual contributions lead to the creation of value” — Ok, I understand that point.
Second, fairness: “Investigators may preferentially reward patients and families with whom they have become emotionally bonded” — that’s addressing a different question and is a red herring. That some doctors might be unprofessional is not a strong argument – let’s just hope most are.
Third, “invoking the extrinsic motivation of money would crowd out intrinsic motivations” — actually I think this is a very interesting point. Altruism can be a powerful force, I hadn’t thought much about how it reacts to financial rewards.