Henrietta Lacks privacy

A piece in the Sunday New York Times by Amy Harmon, "'Informed consent' and the ethics of DNA research", discusses the issues brought up by the recent case of the Havasupai vs. the University of Arizona (which we posted about here). Can anything be done with DNA samples once the original purpose for which blood was collected, and for which researchers had consent, has been accomplished?

Legally, we have no property right to our cells or tissues once they've left our bodies. But, researchers with federal funding are required to inform subjects what they are going to do with the samples, as a condition of getting the samples. Nowadays, that means everything they plan to do with them, for however long the samples are archived. And that includes the use of unforeseen technologies to look for as of yet unpredictable kinds of information.

This issue is not new, and in fact a sixty year old story about this is described in a recent book by Rebecca Skloot called The Immortal Life of Henrietta Lacks. Ms Lacks was a young African American woman who had the misfortune to have a particularly fast-growing form of cervical cancer, diagnosed in the late 1940s. She died in 1951, at the age of 31. She had been treated at Johns Hopkins, in Baltimore, where one George Otto Gey was then attempting to immortalize cell lines, so was collecting whatever tissue samples he could in his effort to perfect the technology for doing this.

Only when Gey's technician tried to grow cells from a sample of Ms Lacks' tumor were they successful. The significance of this was quickly apparent, and cell lines were immediately distributed throughout the medical world to be used in such research as the polio vaccine, and much more. The cells from Ms Lacks' tumor, and/or the DNA, are still in use in labs all over the world.

Neither Gey nor Hopkins ever profited from this work, but the sample was taken without Lacks' knowledge or permission. This was state-of-the-art at the times. Indeed the courts have recently ruled that samples can be used without the patient's permission or knowledge, even for profit (in a case decided by the Supreme Court of California, Moore v. Regents of the University of California.)

In her book, Skloot describes how she became fascinated by Henrietta Lacks in a biology class she took as a teenager, but was frustrated to discover that very little was known about her. Or perhaps she was fascinated because there was so little known. In any case, Skloot eventually decided to write a book about Lacks, and she spent much of her 30s looking for whatever information she could find. That turned out to be not much. So, she turned to Ms Lacks' surviving children and other family members to try to piece together the story of their mother's life.

Actually, by Skloot's own description she hounded Ms Lacks' children until they finally agreed to talk with her -- in one case, it took a year of frequent phone calls. And she fills her book with everything she learns about this woman and her family who, it turns out, are living largely in poverty in Baltimore, Maryland. Because Ms Lacks died young, and in poverty, the artifacts of her own life are few, and because she died when her children were so young, they remember little to nothing about her. So Skloot delves (intrudes?) into the lives of the children, and tells about a murder, sexual abuse, their religious practices, their scientific beliefs and many other heretofore private details. The book is being very well reviewed, and is selling like hotcakes.

But why? As with the Havasupai, Ms Lacks' family members learned by accident that Henrietta Lacks cells were in such wide use. According to Ms Skloot, that knowledge made them feel both that their mother must have been special and that she was being exploited. But, their mother's life is being conflated with the circumstances of her death; the particular tumor she had, and being in the right place at the right time with respect to the development of a particular technological advance. Or indeed, the wrong place at the wrong time, with respect to her privacy and the privacy of generations of her family to come.

To us, there's nothing about this story that would suggest that the world needs, or has a right to know any of the details about the lives of Henrietta Lacks or any member of her family. This book just continues what Ms Lacks' children originally saw as exploitation of their mother by a world out to make a buck. While Skloot has set up a foundation for the Lacks family with some of the proceeds of the book, this book is still poverty tourism, and it rights no wrongs.

Fierce addendum

Just yesterday, the state of Arizona settled and indemnity claim by the Havasupai Indians. Blood samples had been collected putatively for the study of genetic factors that might be predisposing the tribe to diabetes. But the researchers also then searched for genes affecting psychiatric disorders. They had informed consent for the former, but apparently not for the latter.

Of course, the researchers, and other scientists quoted in the story, claimed innocence and that yes, they should be allowed to use DNA for whatever.

Abuse of society by scientists or any other elite starts step by step with this kind of self-important hubris. It is entirely right to stifle it.

This relates directly to our post yesterday about the Yanomami bloods stored in our freezer,  We think that the Yanomami were given a broad explanation of the investigators' intent, because in regard to genes, at least, there wasn't anything specific to look at besides variation. So the use of their samples was for the stated purpose. The issue of distributing samples to other investigators has changed dramatically since then.

But this is not the case with the Havasupai samples. Modern informed consent was in place.

George Church, running the Personal Genome Project may have the unfortunate best and right idea. His volunteers essentially sign away all rights, and acknowledge that there is no way to protect against any use of the samples. No confidentiality guarantees. Nothing.

This may be realistic, and may spread throughout the biomedical research community, that body of noble selfless citizens who simply want to do the experiments they want to do (something we've seen before in history). But it seems unlikely to stick. Sooner or later some use of DNA will be tried that will cause discrimination or something, and the courts will probably decide that the informed consent wasn't informed enough. What if, for example, an investigator some day clones an individual from whom a blood sample was taken? Frankenstein stories are easy to imagine. That doesn't make them true or even likely, but it does show how sensitive and dodgy the issues are, even for scientists with the best of intent.