Update 04/23/10: Last night Rebecca Skloot sent a tweet to @sumedicine about our post:
Henrietta's case is different in many ways, but the research done on her children's samples w/out consent? Not so different
Of course, she’s right. And, hopefully the Lacks' family will find some redress through the victory of the Havasupai tribe.
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You may have heard that Arizona State University and the state's Havasupai Indian tribe have settled lawsuits that allege university scientists misused the tribe's blood samples. The case goes back to the 1990s when more than 200 tribal members gave blood for diabetes research and the university conducted additional research that the tribe contended violated informed consent.
The settlement includes a lump sum $700,000 payment to the tribe's 41 plaintiffs. The university will also return the blood samples to the tribe.
When I heard the news, I wondered whether the settlement should give hope to the family of Henrietta Lacks, the poor black woman who died of cervical cancer in 1951 and whose cancer cells were taken for research without her consent. As I recently discussed with author Rebecca Skloot, Lacks' cells (now known as HeLa cells) went on to multiply trillions of trillions times and help make great advances in biomedical research. Yet her descendents - husband David and five children - lived a life of poverty and without basic health care.
So does the Havasupai tribe's win mean the Lacks' family may finally also be rewarded in some manner? Stanford's Hank Greely, JD, doesn't think so.
Greely, a law professor and director of the Center for Law and Biosciences, told me that ASU's settlement may put some pressure on Johns Hopkins "to do something for the family. [But] the situations are substantially different." He made the following points:
a) HeLa was nearly 60 years ago, well before the current (or even 1990) versions of research ethics, Institutional Review Boards, and informed consent;
b) the Havasupai case involved something done with the samples that the researchers knew, or should have known, the tribe and the subjects didn't want done while, with the HeLa cells, the donor just didn't know anything about it (and there was no particular reason to think she would object), and c) Johns Hopkins University didn't really get anything out of the HeLa Cell line, while [the tribe's samples] did contribute to doctorial dissertations and grant applications (though, of course, no "products") for ASU.
Greely does think the Havasupai case is a "big deal." At least, he hopes it will be, "because I think science has been taking a too cavalier view of how broadly it can use samples and data it gets from people for one purpose."
As for me, I have a sense that Henrietta Lacks' spirit is soaring right now. The case in Arizona doesn't have any legal effect on HeLa cells, but it certainly feels like a moral victory for Henrietta and her heirs.
Previously: Immortal cells: Henrietta Lacks lives on and on