How can we ensure that researchers aren't using our biological material without our consent?
A recent study into patient attitudes toward clinical trials shows that many people are worried about just that issue, as well as potential risks.
Some of that reluctance to participate in these necessary trials could be traced to earlier studies that were done without consent. One of the most notorious breaches of medical ethics was uncovered in 1972, when it was learned that the U.S. Public Health Service let nearly 400 poor black men go untreated for syphilis in order to learn what happens to a person suffering from the disease.
But the so-called Tuskegee Experiment was only one example of a medical system that for a long time was racially biased and had few codified codes of ethics or consent laws. But not all of the examples were as overtly damaging as Tuskegee.
One fairly simple collection of a tissue sample more than a half-century ago had an enormous effect on medicine. Henrietta Lacks was a black woman living in Baltimore in 1951. She was dying of cervical cancer when doctors took a sample from the affected area which changed the course of medical research. But members of her family never knew of the effect that Lacks's cells had - or that the cells continued to live on, in perpetuity - until years later. And that discovery had a profound impact on the family's life, as well.
The story of Lacks's cells - and her family - are the subject of Rebecca Skloot's award-winning book, The Immortal Life of Henrietta Lacks. She says Henrietta Lacks's cells differed from all the other tissue samples scientists had collected before - meaning, they were lucrative.
"There's no requirement - anonymous or not - about telling people their tissues may become profitable, and that someone may make products using them or develop things that would become patented that would become valuable," she says.
Skloot lives in Chicago. She will be the keynote speaker tomorrow at the Milwaukee YWCA's "Evening to Promote Racial Justice."