Category: Genetics

Maryland v. King, Low-Stringency DNA Database Searches, and the Case for a Universal Database

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By Michelle Meyer 

Disclaimer: I’m not a Fourth Amendment person. Rather, my interest in King is in its implications for policies for the use of DNA in the criminal justice system. I spent the better part of a year after my Ph.D and before beginning law school helping to research and edit a book on DNA and the criminal justice system and co-authoring its final chapter with the book’s editor, David Lazer. Although that was ten years ago now, most of the major policy issues in this area have not much changed over the last decade. So, with that caveat, and an invitation to readers to point out anything I say that is out of date or otherwise inaccurate, here are a few quick thoughts on King.

The majority and dissenting opinions spill most of their respective ink taking contrary positions on the primary purpose served by collecting DNA from arrestees. The majority somehow manages to argue with a straight face that the primary purpose (and indeed, to guess from its analysis, apparently the only purpose) of collecting DNA from arrestees is to identify the body of the arrested individual sitting in the booking room. As Justice Scalia wrote in dissent, this claim by the Court “taxes the credulity of the credulous” (slip op. dissent at 1). The clear primary purpose and actual use of statutes authorizing the routine collection of DNA from arrestees is to solve other cases than the one “at bar,” if you will, in the booking room.

One might have thought that the Court went out of its way to avoid finding that the primary purpose of the DNA collection at issue is “to detect evidence of ordinary criminal wrongdoing,” (Indianapolis v. Edmond, 531 U. S. 32, 38 (2000), in order to avail itself of the “special needs” exception to the Fourth Amendment’s usual requirement that searches be conducted pursuant to individualized suspicion. But no. The Court ultimately concludes that the special needs cases “do not have a direct bearing on the issues presented in this case, because unlike the search of a citizen who has not been suspected of a wrong, a detainee has a reduced expectation of privacy” (slip op. at 25). In upholding the state’s power to collect DNA from arrestees, then, the Court relied on — along with the minimally intrusive nature of the search — the arrestee’s reduced expectation of privacy. Indeed, the Court deemed the latter feature “fundamental” to its analysis (id. at 24).

Consider, then, that no such reduced expectation of privacy can be attributed to an even larger class of individuals who are indirectly included in DNA offender databases: the relatives of arrestees (and others who are directly included in offender databases).

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U.S. Supreme Court Upholds Constitutionality of DNA Collection Upon Arrest (Maryland v. King)

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By Michelle Meyer

The U.S. Supreme Court ruled this morning, in Maryland v. King, that it is constitutional under the Fourth Amendment’s protection against “unreasonable” searches and seizures for the state to compel collection of DNA from arrestees. The probable cause required to arrest someone under the Fourth Amendment permits fingerprinting and taking photographs during the booking process, and the Court held that collecting DNA (limited to 13 loci in supposed “junk DNA”) was not relevantly different. The decision was 5-4, with Kennedy writing for the Court and joined by Chief Justice Roberts and Justices Thomas, Alito, and Breyer. Justice Scalia dissented in his usual spirited way, joined by Justices Ginsburg, Sotomayor, and Kagan.

I suspect that one or more Bill of Health bloggers will have some analysis of this decision once they’ve had the chance to digest it. In the meantime, here is a still-relevant primer I co-authored in 2004 on legal and ethical debates involving DNA and the criminal justice system (including issues related to both offender DNA databases and post-conviction access to potentially exculpatory crime scene DNA). Note that Justice Breyer, in addition to being the Court’s resident patent expert (except him to play a large role in the upcoming Myriad gene patenting decision), has been following debates about DNA and the criminal justice system for some time. He authored Chapter 2 of the book I just linked to.

Science, Art, Policy, and the Importance of Good Science Communication

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By Michelle Meyer 

Although I promised that I was done commenting on the artist-cum-policy wonk who claims to make 3-D “masks” of unknown individuals from their discarded DNA, Matthew Herper of Forbes has taken the criticisms of her (and the media covering her project) articulated by me and others directly to the artist. I confess that her response does not make me feel any better. Even if you’re “only” engaging in art, it seems to me that when that art has an obvious science policy message — indeed, one that you invite — you have some obligation to be clear about how “speculative,” as she puts it, your art is. But when you decide to move from the world of art into the world of science, and to start leading policy discussions based on your speculative art and working with forensic examiners? Then you really have a strong duty to be very clear about what your work can and cannot do. That means, among other things, taking care when talking with the media, and correcting the media if they get it wrong.

Yesterday, the Social Science Genetic Association Consortium, an international consortium that pools and conducts social science research on existing genome-wide association study (GWAS) data, and on whose Advisory Board I sit, published (online ahead of print) the results of its first study in Science. That paper — “GWAS of 126,559 Individuals Identifies Genetic Variants Associated with Educational Attainment” (plus supplemental data) — like much human genetics research, has the potential to be misinterpreted in the lay, policy, and even science worlds. That’s why, in addition to taking care to accurately describe the results in the paper itself, including announcing the small effect sizes of the replicated SNPs in the abstract, being willing to talk to the media (many scientists are not), and engaging in increasingly important “post-publication peer review” conversations on Twitter (yes, really) and elsewhere — we put together this FAQ of what the study does — and, just as important, does not — show. So far, our efforts have been rewarded with responsible journalism that helps keep the study’s limits in the foreground. Perhaps the DNA artist should consider issuing a similar FAQ with her speculative art.

Public Policy Considerations for Recent Re-Identification Demonstration Attacks on Genomic Data Sets: Part 1 (Re-Identification Symposium)

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By Michelle Meyer

This post is part of Bill of Health‘s symposium on the Law, Ethics, and Science and Re-Identification Demonstrations. We’ll have more contributions throughout the week. Background on the symposium is here. You can call up all of the symposium contributions by clicking here. —MM

Daniel C. Barth-Jones, M.P.H., Ph.D., is a HIV and Infectious Disease Epidemiologist.  His work in the area of statistical disclosure control and implementation under the HIPAA Privacy Rule provisions for de-identification is focused on the importance of properly balancing competing goals of protecting patient privacy and preserving the accuracy of scientific research and statistical analyses conducted with de-identified data. You can follow him on Twitter at @dbarthjones.

Re-identification Rain-makers

The media’s “re-identification rain-makers” have been hard at work in 2013 ceremoniously drumming up the latest anxiety-inducing media storms. In January, a new re-identification attack providing “surname inferences” from genomic data was unveiled and the popular press and bloggers thundered, rattled and raged with headlines ranging from the more staid and trusted voices of major newspapers (like the Wall Street Journal’s: “A Little Digging Unmasks DNA Donor Names. Experts Identify People by Matching Y-Chromosome Markers to Genealogy Sites, Obits; Researchers’ Privacy Promises ‘Empty’”) to near “the-sky-is-falling” hysteria in the blogosphere where headlines screamed: “Your Biggest Genetic Secrets Can Now Be Hacked, Stolen, and Used for Target Marketing” and “DNA hack could make medical privacy impossible”. (Now, we all know that editors will sometimes write sensational headlines in order to draw in readers, but I have to just say “Please, Editors… Take a deep breath and maybe a Xanax”.)

The more complicated reality is that, while this recent re-identification demonstration provided some important warning signals for future potential health privacy concerns, it was not likely to have been implemented by anyone other than an academic re-identification scientist; nor would it have been nearly so successful if it had not carefully selected targets who were particularly susceptible for re-identification.

As I’ve written elsewhere, from a public policy standpoint, it is essential that the re-identification scientists and the media accurately communicate re-identification risk research; because public opinion should, and does, play an important role in setting priorities for policy-makers. There is no “free lunch”. Considerable costs come with incorrectly evaluating the true risks of re-identification, because de-identification practice importantly impacts the scientific accuracy and quality of the healthcare decisions made based on research using de-identified data. Properly balancing disclosure risks and statistical accuracy is crucial because some popular de-identification methods can unnecessarily, and often undetectably, degrade the accuracy of de-identified data for multivariate statistical analyses. Poorly conducted de-identification may fail to protect privacy, and the overuse of de-identification methods in cases where they do not produce meaningful privacy protections can quickly lead to undetected and life threatening distortions in research and produce damaging health policy decisions.

So, what is the realistic magnitude of re-identification risk posed by the “Y-STR” surname inference re-identification attack methods developed by Yaniv Erlich’s lab? Should *everyone* really be fearful that this “DNA Hack” has now made their “medical privacy impossible”? Read More

An Open Letter From a Genomic Altruist to a Genomic Extrovert (Re-Identification Symposium)

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By Michelle Meyer

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 throughout the week. —MM

Dear Misha:

In your open letter to me, you write:

No one is asking you to be silent, blasé or happy about being cloned (your clone, however, tells me she is “totally psyched”).

First things first: I have an ever-growing list of things I wish I had done differently in life, so let me know when my clone has learned how to read, and I’ll send it on over; perhaps her path in life will be sufficiently similar to mine that she’ll benefit from at least a few items on the list.

Moving on to substance, here’s the thing: some people did say that PGP participants have no right to complain about being re-identified (and, by logical extension, about any of the other risks we assumed, including the risk of being cloned). It was my intention, in that post, to articulate and respond to three arguments that I’ve encountered, each of which suggests that re-identification demonstrations raise few or no ethical issues, at least in certain cases. To review, those arguments are:

  1. Participants who are warned by data holders of the risk of re-identification thereby consent to be re-identified by third parties.
  2. Participants who agree to provide data in an open access format for anyone to do with it whatever they like thereby gave blanket consent that necessarily included consent to using their data (combined with other data) to re-identify them.
  3. Re-identification is benign in the hands of scholars, as opposed to commercial or criminal actors.

I feel confident in rejecting the first and third arguments. (As you’ll see from the comments I left on your post, however, I struggled, and continue to struggle, with how to respond to the second argument; Madeleine also has some great thoughts.) Note, however, two things. First, none of my responses to these arguments was meant to suggest that I or anyone else had been “sold a bill of goods” by the PGP. I’m sorry that I must have written my post in such a way that it leant itself to that interpretation. All I intended to say was that, in acknowledging the PGP’s warning that re-identification by third parties is possible, participants did not give third parties permission to re-identify them. I was addressing the relationship between re-identification researchers and data providers more than that between data providers and data holders.

Second, even as to re-identification researchers, it doesn’t follow from my rejection of these three arguments that re-identification demonstrations are necessarily unethical, even when conducted without participant consent. Exploring that question is the aim, in part, of my next post. What I tried to do in the first post was clear some brush and push back against the idea that under the PGP model — a model that I think we both would like to see expand — participants have given permission to be re-identified, “end of [ethical] story.” Read More

DNA Art

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According to an article in the NYT, an artist has collected DNA samples from litter on sidewalks, such as chewing gum and cigarette butts, and used those samples to extract and sequence DNA that she then used to make computer models of their owners’ faces. She then printed 3-D masks that she is showing at her upcoming exhibit called Stranger Visions. The artist hopes her exhibit will spark a dialogue over genetic surveillance.

The NYT article explains that

[w]hile staring at the wall of her therapist’s office, the artist Heather Dewey-Hagborg noticed a strand of hair stuck in a hanging print. Walking home, she noticed that the subways and sidewalks were littered with genetic material on things like chewing gum and cigarette butts, some still moist with saliva. Curious about what she could learn, Ms. Dewey-Hagborg began to extract and sequence DNA from these discarded materials. Then — and here it gets a little eerie — she began to make computer models of their owners’ faces, using genetic clues to print 3-D masks that she concedes “might look more like a possible cousin than a spitting image.” Hanging these portraits along with the original samples, she says, is “a provocation designed to spur a cultural dialogue about genetic surveillance.” After the June exhibitions, Ms. Dewey-Hagborg will show her work early next year at the New York Public Library. She has also collaborated on a tongue-in-cheek project called DNA spoofing, which purports to offer ordinary people some techniques to avoid detection by scrambling their genetic material.

Talk and exhibition at Genspace in Brooklyn on June 13. Exhibition at QF Gallery in East Hampton, N.Y., opens June 29.

[Cross-posted from HealthLawProf Blog]

Reidentification as Basic Science (Re-Identification Symposium)

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By Michelle Meyer

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

Arvind Narayanan (Ph.D. 2009) is an Assistant Professor of Computer Science at Princeton. He studies information privacy and security and has a side-interest in technology policy. His research has shown that data anonymization is broken in fundamental ways, for which he jointly received the 2008 Privacy Enhancing Technologies Award. Narayanan is one of the researchers behind the “Do Not Track” proposal. His most recent research direction is the use of Web measurement to uncover how companies are using our personal information.

Narayanan is an affiliated faculty member at the Center for Information Technology Policy at Princeton and an affiliate scholar at Stanford Law School’s Center for Internet and Society. You can follow him on Twitter at @random_walker.

By Arvind Narayanan

What really drives reidentification researchers? Do we publish these demonstrations to alert individuals to privacy risks? To shame companies? For personal glory? If our goal is to improve privacy, are we doing it in the best way possible?

In this post I’d like to discuss my own motivations as a reidentification researcher, without speaking for anyone else. Certainly I care about improving privacy outcomes, in the sense of making sure that companies, governments and others don’t get away with mathematically unsound promises about the privacy of consumers’ data. But there is a quite different goal I care about at least as much: reidentification algorithms. These algorithms are my primary object of study, and so I see reidentification research partly as basic science.

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I Never Promised You a Walled Garden (Re-Identification Symposium)

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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

By Misha Angrist

Dear Michelle:

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?

Warm regards,

Misha

Reflections of a Re-Identification Target, Part I: Some Information Doesn’t Want To Be Free (Re-Identification Symposium)

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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. Please note that Bill of Health continues to have problems receiving some comments. If you post a comment to any symposium piece and do not see it within half an hour or so, please email your comment to me at mmeyer @ law.harvard.edu and I will post it. —MM

By Michelle N. Meyer

I wear several hats for purposes of this symposium, in addition to organizer. First, I’m trained as a lawyer and an ethicist, and one of my areas of scholarly focus is research regulation and ethics, so I see re-identification demonstrations through that lens. Second, as a member of the advisory board of the Social Science Genetics Association Consortium (SSGAC), I advise data holders about ethical and regulatory aspects of their research, including issues of re-identification. I may have occasion to reflect on this role later in the symposium. For now, however, I want to put on my third hat: that of data provider to (a.k.a. research participant in) the Personal Genome Project (PGP), the most recent target of a pair of re-identification “attacks,” as even re-identification researchers themselves seem to call them.

In this first post, I’ll briefly discuss my experience as a target of a re-identification attack. In my discussions elsewhere about the PGP demonstrations, some have suggested that re-identification requires little or no ethical justification where (1) participants have been warned about the risk of re-identification; (2) participants have given blanket consent to all research uses of the data they make publicly available; and/or (3) the re-identification researchers are scholars rather than commercial or criminal actors.

In explaining below why I think each of these arguments is mistaken, I focus on the PGP re-identification demonstrations. I choose the PGP demonstrations not to single them out, but rather for several other reasons. First, the PGP attacks are the case studies with which, for obvious reasons, I’m most familiar, and I’m fortunate to have convinced so many other stakeholders involved in those demonstrations to participate in the symposium and help me fill out the picture with their perspectives. I also focus on the PGP because some view it as an “easy” case for re-identification work, given the features I just described. Therefore, if nonconsensual re-identification attacks on PGP participants are ethically problematic, then much other nonconsensual re-identification work is likely to be as well. Finally, although today the PGP may be somewhat unusual in being so frank with participants about the risk of re-identification and in engaging in such open access data sharing, both of these features, and especially the first, shouldn’t be unusual in research. To the extent that we move towards greater frankness about re-identification risk and broader data sharing, trying to achieve clarity about what these features of a research project do — and do not — mean for the appropriateness of re-identification demonstrations will be important.

Having argued here about how not to think about the ethics of re-identification studies, in a later post, I plan to provide some affirmative thoughts about an ethical framework for how we should think about this work.

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GM Crops and the Environment

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By Joanna Sax

I’ve become increasingly interested in GM crops, in general, after the recent Petrie-Flom Conference on the FDA in the 21st Century.

I know there is a lot of discussion and controversy about genetically-modified (GM) crops.  I want to pick-up on a topic that is related to GM crops – that is, the environment.  The May 2nd issue of Nature includes a special section on GM crops.  Part of this section provides information on the environmental advantages of GM crops.  Most of the GM crops contain DNA that allows them to be resistant to herbicides or insects.  It turns out that a study showed that there was a 6.1% reduction in the use of herbicide between 1996 and 2011 on crops of herbicide-resistant cotton compared to the amount of herbicide that would have been used to treat conventional crops.  See Natasha Gilbert, A Hard Look at GM Crops, 497 Nature 24, 25 (2012) (I believe this article is free if you search for it on the Nature website).  A reduction in the amount of herbicide used to treat our fabric or food sources may have environmental advantages.  Less herbicide run-off into waterways.  Less herbicide for animals to consume.  See id.

Other scientific data provide inconclusive results about environmental impacts.  Some studies look at whether transgenes are spreading to weeds or non-GM crops.  For example, husbandry techniques of cross-breeding may unknowingly cross breed a non-transgenic line with a transgenic line and thereby create a transgenic line.  Now, a GM crop will be grown without the farmer even knowing it.  See id. at 24, 26.  And, if the GM crop has some sort of negative environmental impact, then a farmer may unwittingly be creating potential harm to the environment.

One thing I want to raise with this post is the importance to incorporate multiple areas of study – biology, environmental studies, genetics, health, regulation, etc. – to determine how we advance our understanding of GM crops.  I imagine that many readers of this blog are much more familiar with GM crops than me, so I welcome your comments.