Many of you may be familiar with the story of Henrietta Lacks. Lacks was a poor African American woman who died of ovarian cancer in 1951, and whose cells (specifically, her tumor cells) were taken and immortalized for the scientific study.
At the time, obtaining patient consent for such a practice was not standard as it is now, and no such consent was obtained in the case of Lacks, whose cells have become known as HeLa cells and can be used for any number of things. HeLa cells, as any cancer researcher will already know, are practically ubiquitous in laboratory research, making obtaining retroactive consent from Lacks’ family a difficult practical issue for a number of reasons.
In 2010, Rebecca Skloot wrote a book about the Lacks case, entitled The Immortal Life of Henrietta Lacks. Although I have yet to read Skloot’s book, my understanding (correct me if I’m wrong) is that she comes down firmly on the side of the Skloot family, and that she at least implies, if not states outright, that the practice of using biological material of a patient without consent from them or their next of kin is highly suspect.
Recently, the HeLa cell line had its entire genome published, which prompted Skloot to write an editorial in the New York Times.
The family has been through a lot with HeLa: they didn’t learn of the cells until 20 years after Lacks’s death, when scientists began using her children in research without their knowledge. Later their medical records were released to the press and published without consent. Because I wrote a book about Henrietta Lacks and her family, my in-box exploded when news of the genome broke. People wanted to know: did scientists get the family’s permission to publish her genetic information? The answer is no.
Michael Eisen, a biologist at UC-Berkeley whose speech on open access publishing I made a post about last night, wrote an interesting response to Skloot on his blog. Eisen argues that the practice of obtaining and utilizing biological material from patients without consent is undoubtedly wrong, and that every effort should be made to distance lab work from cell lines obtained in such a way. There, he and Skloot agree.
To me, there really is no moral question here. We should not be using HeLa cells because no consent was obtained to take them. And I am very uncomfortable with the general idea that heirs/descendants should be allowed to retroactively consent for a dead relative. Nothing that can happen now or in the future can make up for the lack of real consent. But whether they should be used or not, these cells are being used all over the planet. Given that this is unlikely to change, there’s really no choice but to de facto give the Lacks family a kind of proxy consenting power to act on Henrietta’s behalf.
Eisen, however, sees a difference between that issue and the problems that Skloot and others have with publishing the genome of a cell line taken from an individual who has relatives with something to lose.
Skloot’s piece glides from the issue of how to retroactively get Henrietta’s permission to experiment with and publish about her cells to the seemingly related issue of whether publication of the HeLa cell genome is an invasion of the privacy of Lacks’ living relatives. Skloot repeatedly raises the issue of all the things we can learn about an individual and their relatives by sequencing their DNA, and whether family members should have some kind of veto power over the publishing of a relatives genome.
But this is a very different than the question of how to obtain consent from an individual who is not longer alive. To see why, lets stipulate that Henrietta Lacks had consented to all these studies – had, in sound mind, given permission for the doctors to take her cell lines, establish cultures, send them around the world to be used for any purpose and to freely publish the results of any studies on these cells. Would you still require the authors of the paper to consent Lacks’ family?
Skloot clearly thinks the answer is yes – positing that publishing any individual’s genome sequence is intrinsically an invasion of the privacy of their relatives –whether or not the sequenced individual consented to the process.
There are, as Eisen points out, two issues at play here. (1) If I die and my cells are taken and used without my consent, can the future consent (or lack thereof) of my heirs be used as a meaningful proxy, and (2) If I decide to publish my genome, can my family members (whose genetic information will be similar to mine) stop me, because they are interested in maintaining the confidentiality of their own genetic material?
Although Eisen agrees with Skloot on the first, he disagrees with her on the second.
Some of you (not me) may think that a family’s right to genetic privacy trumps the right of an individual to publish their genome.
The death of the individual in question, and the retroactive publishing of their genome without consent, muddles the issue, so let’s stick with the following question: could I try to publish my genome without the consent of my family?
I have to agree with Eisen on this one, and not just only because I tend to be more of an individualist than most other people I encounter. First of all, the grounds that people use for arguing in favor of genome secrecy are ones–life insurance, disability coverage, etc–that I do not find entirely convincing for a number of reasons. For one thing, insurance companies are modeled for an older system, in which access to such information was not only impossible, but probably inconceivable. If our health care system is allowed to grow and keep up with the times, it’s possible that genomic information could be used to lower health care costs rather than to shut people out of insurance. This may be a long ways off, but I think it’s important not to get tunnel vision when considering such a big issue. (On a related note, I also tend to favor moving away from insurance as a model for all health care purchases, which I think would also help to alleviate objections to open genomes.)
For the moment, though, we do have an insurance-based health care system, so perhaps we should stick to arguments pertaining to today.
Surprisingly, I find Walter Block’s stance on libel, slander, and blackmail to be somewhat instructive here:
What is a person’s “reputation?” What is this thing which may not be “taken lightly?” Clearly, it is not a possession which may be said to belong to him in the way, for example, his clothes do. In fact, a person’s reputation does not “belong” to him at all. A person’s reputation is what other people think of him; it consists of the thoughts which other people have.
A man does not own his reputation any more than he owns the thoughts of others–because that is all his reputation consists of. A man’s reputation cannot be stolen from him any more than the thoughts of others can be stolen from him. Whether his reputation was taken from him by fair means or foul, by truth or falsehood, he did not own it in the first place and, hence, should have no recourse to the law for the damages.
What then are we doing when we prohibit, or object to, libel? We are prohibiting someone from affecting or trying to affect the thoughts of other people. But what does the right of free speech mean if not that we are all free to try to affect the thoughts of those around us? So we must conclude that libel and slander are consistent with the rights of free speech.
Now, Block’s position is certainly a provocative one, and I’m not here to either endorse or condemn his views on libel, slander, and free speech. What I am suggesting, however, is that we consider Block’s desire for departing from society’s normative position on a given issue and instead try to determine what is really, in logical terms, going on.
If I make the decision to publish my genome, for instance, and my family objects, I would likely hear their objections and possibly change my attitude. If I do not, however, one of my relatives might press a little harder: think about what this could do, they may argue, to their chances for obtaining life insurance, or some other related necessity.
But what is, a la Block, really going on here? What is really going on is that my relative is trying to keep her genome a secret, because she worries that the truth about her genome could convince a provider of a service not to accept her as a client. Basically, she worries that publicly available information about our partially shared genome could preclude her from receiving property, in the form of benefits or payments, from someone else.
Some people feel that this is justified. Health care is, or should be, a human right, they might argue. Since it is not provided, it might then be justified to obtain it by any means possible, and the benefits or payments from an insurance company might be considered the rightful property of the beneficiary. I’m not going to endorse or reject this view, but simply going to point out that no agreement can be made on this issue until all the terms and variables have been defined. If you believe those benefits are your human right, then you probably come to a different conclusion on this issue than those who believe that health care is not and can never be a human right, since your position on this issue shifts the locus of the property rights involved.
In fact, although the familial issues involved might be very complicated, the property rights of genome publication have some other basic and interesting corollaries. Consider, for example, Stephan Kinsella’s position against intellectual property, which states that since ideas are infinitely reproducible they cannot legitimately be called property. I think a similar issue could be seen to apply here: publishing my genome in no way precludes my relative from access to hers. I am not physically depriving her of all of the biochemical materials that make up her genome, or of her ability to do with that physical material as she pleases. I am simply making information publicly available, which she worries could affect the decisions of others as to how to distribute their property.
There is a lot more that can be said on this; nothing can be concluded, however, without a more basic conversation on the nature of the intersection between body, health, and property.