Donation and compensation in research: Should patients be paid?

Cells collected from patients are the backbone of much of biomedical science. When should patients be paid for those cells? (jepoirrier/Flickr)

A few months ago, my mother had a skin cancer removed from her nose. To the best of our knowledge, the tumor tissue was discarded in a biohazard bag, never to be seen again.

Often, though, bits of tumor like that removed from Mom become the raw material that keeps the engine of research running. And every once in a while, a patient’s tissues lead to a real blockbuster, like a cell line or a protein with uniquely valuable biological properties or a lucrative drug that benefits millions of people.

Which brings us (literally) to the $64,000 question: Should the patient who donated those tissues reap some of the rewards?

Nowadays when this question arises, people’s thoughts turn to Henrietta Lacks. A poor African-American woman who died in Baltimore from cervical cancer in the 1950s, she’s been immortalized in two ways: in Rebecca Skloot’s The Immortal Life of Henrietta Lacks, and in the form of the HeLa cell line, one of the most important cells in the history of medical research. Probably trillions of HeLa cells sit in laboratories and freezers around the world, all from a snip of Lacks’s cancer, collected by her doctors at Johns Hopkins without her or her family’s knowledge or consent.

“Most people who read Skloot’s book come away thinking, ‘Her family should be compensated,'” says Robert Truog, MD, a critical care specialist and medical ethicist at Boston Children’s Hospital. “I certainly did at first.”

But Truog revisited that question when he and his colleagues in the ethics consultation service at Harvard Catalyst were approached by clinicians from Dana-Farber Cancer Institute.

“The clinicians were caring for a man with a rare tumor who was having fluid drained from his chest to help him to breathe,” Truog explains. “Because they had a good relationship with him, they asked for and received his consent to try to take some of this fluid and see if they could capture tumor cells from the fluid for research.”

The doctors did indeed isolate cells from the fluid, turning them into what has become a valuable research tool. The patient having died, they wondered whether they should compensate the family for the donated tissue.

“The Lacks case is moving, but we questioned whether it was right to jump to the conclusion that researchers should pay patients for donated tissues for research,” Truog says. “After careful consideration, we decided that the team’s impulse to ‘share the wealth’ was misguided and advised against it.”

Why? As discussed in a recent paper in Science, Truog’s team’s argument rests on two key points. First, the tissue was removed in the course of the patient’s care and had little intrinsic value. “It was tissue that would otherwise have been discarded,” Truog says. “The value associated with the tool the clinicians created comes not from this raw material, the cells the patient contributed, but from the work they put in.”

(Put another way, a cookie’s value doesn’t come from the wheat, but from the work done to make the wheat into flour, mix it with other ingredients, and bake it.)

Robert Truog, MD

The second point is what I’ll call the “lottery factor.” Millions of patients donate tissue altruistically for research, but doctors and researchers can’t know at the outset whose donation, if any, will end up making money. “It’d be like winning the lottery,” says Truog. “For every blockbuster there are probably 1,000 samples that won’t prove valuable. If we agree to compensate the blockbusters, then we should compensate everyone who agrees to donate their tissue, and that’s neither feasible nor fair.”

That’s not to say that there aren’t times when compensation is appropriate. “If someone signs up for a clinical study and has to make hospital visits they wouldn’t normally make, are inconvenienced or undergo additional pain or discomfort in the course of tissue collection, then absolutely we should get their consent, be totally transparent with them, and pay for that inconvenience,” Truog explains.

“But in situations like this where the tissue was obtained as a byproduct of clinical care,” he continues, “we think that as a matter of ethics such payments are not necessary, and that as a matter of public policy it really complicates things if we start paying people for that byproduct.”

Readers: What do you think? Does the research enterprise have a responsibility to compensate patients who consensually donate tissue for research in the course of care? Sound off in the comments or on our Facebook page, or tweet us with your opinion at @science4care.