Wednesday, April 28, 2010

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.

16 comments:

Anne Buchanan said...

I should add that George Gey fully intended to maintain Henrietta Lacks' privacy -- he called the cells HeLa cells, and, when asked, told people they were from a patient named Helen Lane. Which is what I was told when I first used DNA from these cells as a positive control for PCR.

Holly Dunsworth said...

I worked with these for nearly a year and never asked what HeLa meant. Ugh.

Ken Weiss said...

No, Holly not 'Ugh'. It was a good protection of her identity to call her Helen Lane or not identify who. What does it matter? If you had checked, you'd have known that HeLa cells were from a cervical cancer. That's all that one needs to know for most uses of those cells.

The book's invasion of privacy is a legitimate objection that most reviewers have seemed to overlook. There is a much better book pub. last year or in '08, about the actual science, but of course that didn't make the trade press.

If you needed to know HeLa's racial origin, for example, that would have been in the ATCC or other documentation. Again, her name is irrelevant and the alias served an honorable purpose til the true name was revealed.

Anne Buchanan said...

It's an interesting issue, I think. These cells did come from a person, so shouldn't she be acknowledged? On the other hand, the properties of these cells that originally made them so invaluable had nothing to do with her as a person, so need we even know her name?

Holly Dunsworth said...

What I meant was, I didn't even think to wonder what "HeLa" meant. That's all. Just musing on Anne's first comment.

Ken Weiss said...

Yes, I understood. I guess you might have asked enough to know these were human cervical cancer cells, because that could be relevant to other work (the cell line is immortal because it's not normal, and its genome and karyotype are very, and uniquely, anomalous).

But they could have been given a catalog name like HCL1 (human cell line #1), rather than named after a person, and you would have no need or reason to ask further....

Anne Buchanan said...

In the lab, samples are enough steps removed from the person they came from that you tend not to wonder about that person. That's usually how it should be, though, with anonymized samples and so on.

Matthias Wjst said...

There might be soutions available to balance the interest of individuals and of researchers. The New Scientist summarized some opinions last week at http://www.newscientist.com/article/dn18832-native-american-settlement-highlights-dna-dilemma.html Our proposal is to use email or social networks to inform about current research with an opt-out possibility.

Anne Buchanan said...

Thanks, Matthias. The idea of using email or social networks is obviously a good one. Of course, the older the samples, the harder it is to contact all participants. George Church's approach of blanket consent for anything and everything is probably the least problematic -- but certainly not everyone would agree.

Ken Weiss said...

Nice to hear from you, Mattias! Actually there is good precedent for the idea. One that has worked very well, I think, is the Framingham Heart Study in the US. Even into their 3rd generation, I think the participants feel engaged with the project, and supportive.

I don't know if anyone has opted out, but there would be no problem if that were to occur, I think, unless it were some sort of mass action.

The subjects in this case are regularly seen by the project staff, so this is different from a bleed once - never see again kind of study. However, I think Church's project, even with its open consent, will be like Framingham in wanting to keep up with, and hence keep in touch with, the subjects. It should work unless abuses by someone (unlikely to be Church or his group!) cause a change in attitudes. Hopefully that won't happen.

Anne Buchanan said...

John Hawks writes about the Amy Harmon piece over at John Hawks weblog, http://johnhawks.net/weblog on April 29. He includes a link to legal issues re. informed consent, as well as to our post on the Yanomoma bloods. (Thanks for the hat tip, John.)

GGreene said...

As a non-biologist and lacking a legal education, the privacy violation here seems to accrue to the author of the book, not the original Dr.'s and Researchers. That said, it seems that there are a number of issues here that would benefit from establishing some boundaries within the law, e.g., is there a difference between taking arguably normal cells and taking diseased/unwanted cells? Sort of like the difference between entering my house and taking something vs. removing something from my trash (things I didn't want and wanted to discard).

In the abstract, I could argue that we have a 'duty of care' to our fellow mammals to allow our discarded or 'taken with my permission' cells to be analyzed/studied/propagated provided some simple conditions are met, such as: 1) I'm informed, or my guardian is informed 2) That there's no money involved, i.e., I should be compensated if this is going to be a moneymaking venture, and I have the right to refuse if this is going to be a moneymaking venture 3) My privacy/identity should be sacrosanct akin to adoption law guidelines or some such and 4) Some boilerplate wording about unanticipated future use being okay, etc., and no 'grand-fathered/mothered' claims being allowed, i.e., we don't get to rewrite history and apply current day standards to decades/centuries old cases. (It always interests me when we announce a new fossil find - well, that distant relation was someone's relative, too, but we view it as 'scientific' because an appropriate but undefined amount of time has passed - whereas if someone dug up my Grandmother's skeleton and started hacking away, we'd be outraged. At least I would.)

Probably naive and simplistic but...there, I said it!

Anne Buchanan said...

Yes, to us at least the privacy violation is on the author's part. Henrietta Lacks was, it seems, treated as anyone would have been in 1950, by the researchers and the hospital. And, as we say in the post, the courts have upheld a person's non-ownership of tissues taken from his/her body -- your trash metaphor, though it also covers non-diseased tissues. But, if the tissue is taken as part of a federally funded project, the researcher must have the individual's informed consent to take it, and to use it -- all the issues involved with whether anyone can be truly 'informed' notwithstanding. These days, researchers are generally asking for consent to do whatever they can think of now, or will think of in the future, or their descendants will think of. Blanket consent. And sometimes consent specifies the kinds of things you suggest. I hasten to add that I'm not an expert on the legal aspects of informed consent, but that's my understanding.

As for whether it's appropriate to dig up someone's grandmother, American archaeology has had to confront just that issue in the last 20 years or so, since the Native American Graves Protection and Repatriation Act was enacted in 1990. Museums are required to return skeletons or bones known to be from Native American groups upon request. Basically for just the reason you suggest.

Ken Weiss said...

Well, it's a very large subject, but here are a few responses.
First, it matters not whether diseased or normal tissue is involved, so long as it came from you.

Second, once it's out of you, if you grant permission for use, you have no further rights monetary or otherwise. For research projects, subjects agree to this and to anonymity. Over the years, release for monetary value etc. have become routine: you get nothing and have no rights.

Third, confidentiality itself may no longer be protectable, and that is why George Church's Personal Genome Project has subjects sign away all rights whatever (see his website).

How the future will play out, who knows. Whether you'd have any rights to your Grandmother's bones is unclear, but US archeologists deal with this daily in relation to ancient Native American burial material.

James Goetz said...

This reminds me of when I took a reading course with Mark Stoneking. During that time, I worked with two colleagues who grew up as neighbors and were told that they were twins separated at birth and adopted by neighboring parents. I told them that we could prove their siblingship if they each gave me a hair sample. And they gave me the hair samples. Mark was ready for one of his research assistants to do the DNA test on the samples. However, the next day, my friends said that we could do the test, but they didn't want to know the results because they could be devastated if it turned out that they weren't natural siblings as they have been told. And then I realized that I couldn't handle knowing the test results while I would spend time with them at work. Part of me had great curiosity about how the test results would have turned out, but I requested to cancel the test.

Ken Weiss said...

That sounds like what's called ethical action to me, Jim, and absolutely the right thing to do.