This post is part of Bill of Health‘s symposium on the Law, Ethics, and Science of Re-Identification Demonstrations. You can call up all of the symposium contributions here. We’ll continue to post contributions into next week. —MM
You know I respect your work immensely: your paper on the heterogeneity problem will be required reading in my classes for a long time to come.
But as far as this forum goes, I feel like I need both to push back and seek clarity. I’m missing something.
As you know, the PGP consent form includes a litany of risks that accompany the decision to make one’s genome and medical information public with no promises of privacy and confidentiality. These risks range from the well documented (discovery of non-paternity) to the arguably more whimsical (“relatedness to criminals or other notorious figures.”), including the prospect of being cloned. You write:
Surely the fact that I acknowledge that it is possible that someone will use my DNA sequence to clone me (not currently illegal under federal law, by the way) does not mean that I have given permission to be cloned, that I have waived my right to object to being cloned, or that I should be expected to be blasé or even happy if and when I am cloned.
Of course not. No one is asking you to be silent, blasé or happy about being cloned (your clone, however, tells me she is “totally psyched”).
But I don’t think it’s unfair to ask that you not be surprised that PGP participants were re-identified, given the very raison d’être of the PGP.
I would argue that the PGP consent process is an iterative, evolving one that still manages to crush HapMap and 1000 Genomes, et al., w/r/t truth in advertising (as far as I know, no other large-scale human “subjects” research study includes an exam). That said, the PGP approach to consent is far from perfect and, given the inherent limitations of informed consent, never will be perfect.
But setting that aside, do you really feel like you’ve been sold a bill of goods? Your deep–and maybe sui generis–understanding of the history of de-identification demonstrations makes me wonder how you could have been shocked or even surprised by the findings of the Sweeney PGP paper.
And yet you were. As your friend and as a member of the PersonalGenomes.org Board of Directors, this troubles and saddens me. In the iterative and collaborative spirit that the Project tries to live by, I look forward to hearing about how the PGP might do better in the future.
In the meantime, I can’t help but wonder: Knowing what you know and having done your own personal cost-benefit analysis, why not quit the PGP? Why incur the risk?