Re-Identification Is Not the Problem. The Delusion of De-Identification Is. (Re-Identification Symposium)

By Michelle Meyer

This is the second post in Bill of Health‘s symposium on the Law, Ethics, and Science of Re-Identification Demonstrations. We’ll have more contributions throughout the week, and extending at least into early next week. Background on the symposium is here. You can call up all of the symposium contributions by clicking here (or by clicking on the “Re-Identification Symposium” category link at the bottom of any symposium post).

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 Jen Wagner, J.D., Ph.D.

Before I actually discuss my thoughts on the re-identification demonstrations, I think it would be useful to provide a brief background on my perspective.

Identification≠identity

My genome is an identifier. It can be used in lieu of my name, my visible appearance, or my fingerprints to describe me sufficiently for legal purposes (e.g. a “Jane Doe” search or arrest warrant specifying my genomic sequence). Nevertheless, my genome is not me. It is not the gist of who I am –past, present or future. In other words, I do not believe in genetic essentialism.

My genome is not my identity, though it contributes to my identity in varying ways (directly and indirectly; consciously and subconsciously; discretely and continuously). Not every individual defines his/her self the way I do. There are genomophobes who may shape their identity in the absence of their genomic information and even in denial of and/or contradiction to their genomic information. Likewise, there are genomophiles who may shape their identity with considerable emphasis on their genomic information, in the absence of non-genetic information and even in denial of and/or contradiction to their non-genetic information (such as genealogies and origin beliefs).

My genome can tell you probabilistic information about me, such as my superficial appearance, health conditions, and ancestry. But it won’t tell you how my phenotypes have developed over my lifetime or how they may have been altered (e.g. the health benefits I noticed when I became vegetarian, the scar I earned when I was a kid, or the dyes used to hide the grey hairs that seem proportional to time spent on the academic job market). I do not believe in genetic determinism. My genomic data is of little research value without me (i.e. a willing, able, and honest participant), my phenotypic information (e.g. anthropometric data and health status), and my environmental information (e.g. data about my residence, community, life exposures, etc). Quite simply, I make my genomic data valuable.

As a PGP participant, I did not detach my name from the genetic data I uploaded into my profile. In many ways, I feel that the value of my data is maximized and the integrity of my data is better ensured when my data is humanized.

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9th Circuit Strikes Down Arizona 20 Week Fetal Pain Abortion Ban: Some Reflections on the Opinion

[Cross-Posted at Prawsfblawg]

Yesterday, the 9th Circuit (a panel of Berzon, Schroeder, Kleinfeld) struck down as unconstitutional Arizona’s ban on abortion at 20 weeks. As the court described the statute:

The challenged portion of Section 7, codified at Arizona Revised Statutes § 36-2159, reads:

A. Except in a medical emergency, a person shall not perform, induce or attempt to perform or induce an abortion unless the physician or the referring physician has first made a determination of the probable gestational age of the unborn child. In making that determination, the physician or referring physician shall make any inquiries of the pregnant woman and perform or cause to be performed all medical examinations, imaging studies and tests as a reasonably prudent physician in the community, knowledgeable about the medical facts and conditions of both the woman and the unborn child involved, would consider necessary to perform and consider in making an accurate diagnosis with respect to gestational age.

 B. Except in a medical emergency, a person shall not knowingly perform, induce or attempt to perform or induce an abortion on a pregnant woman if the probable gestational age of her unborn child has been determined to be at least twenty weeks.

 The stated purpose of the Act is to “[p]rohibit abortions at or after twenty weeks of gestation, except in cases of a medical emergency, based on the documented risks to women’s health and the strong medical evidence that unborn children feel pain during an abortion at that gestational age.” H.B. 2036, sec. 9(B)(1). The Act lists a number of legislative findings in support of the assertions in the purpose provision, with citations to medical research articles. See H.B. 2036, sec. 9(A)(1)–(7).

After Nebraska passed the first of these kinds of bills in 2010, Dr. Sadath Sayeed and I wrote about them in Fetal Pain, Abortion, Viability, and the Constitution, for the peer-reviewed Journal of Law, Medicine and Ethics in 2011 on the constitutionality and normative justifiability of these statutes. This is the first case of one of these statutes to reach a Circuit court decision on the merits, so I thought I would offer some thoughts. This will be from the perspective of a scholar not an advocate, though given that I have argued that these statutes should be held unconstitutional I don’ t pretend to be disinterested.

Judge Berzon’s opinion for the panel takes about as strong a stance against these statutes as possible. She presents this as an easy somewhat “paint-by-numbers” case of unconstitutionality based on prior precedent. Her logic is Roe and Casey make viability an absolutely cut-off for restricting abortions. Viability has to be decided according to the Court by physicians in individual cases. This is a restriction and not a regulation of abortion. The restriction covers pre-viability fetuses. Therefore it is unconstitutional.

That is strongly put, but only by completely ignoring the fetal pain aspects of the case. Indeed to read her opinion one would scarcely know that fetal pain is at issue. As we argued in our article, and I put it even more succinctly in an op-ed in the Washington Post last year:

The fetal-pain bills do not directly challenge the Supreme Court’s judgment. Instead, they assert a new theory for outlawing abortion. The Nebraska bill states that “by twenty weeks after fertilization there is substantial evidence that an unborn child has the physical structures necessary to experience pain.” The legislatures passing these laws say that preventing this pain is a compelling state interest that justifies prohibiting abortion.

Hence, the loophole: Although the Supreme Court has identified preserving fetal life after viability as a compelling interest, the justices have never said it is the only one.

These statutes might be thought of as asking the courts to find that preventing pain to fetuses is also a compelling state interest. Alternatively, states may argue that, although preventing pain is not compelling on its own, it becomes so when combined with the state’s interest in preserving fetal life before viability.

Thus, I think Judge Berzon writes a strong opinion only by blinding the reader to what is new and difficult here.

By contrast, I think Judge Kleinfeld’s concurrence does a better job of wrestling with the hard issues. His opinion echoes four points we make in our article:

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Sperm Donation, Anonymity, and Compensation: An Empirical Legal Study

[Cross-Posted at Prawfsblawg]

In the United States, most sperm donations* are anonymous. By contrast, many developed nations require sperm donors to be identified, typically requiring new sperm (and egg) donors to put identifying information into a registry that is made available to a donor-conceived child once they reach the age of 18. Recently, advocates have pressed U.S. states to adopt these registries as well, and state legislatures have indicated openness to the idea.

In a series of prior papers I have explained why I believe the arguments offered by advocates of these registries fail. Nevertheless, I like to think of myself as somewhat open-minded, so in another set of projects I have undertaken to empirically test what might happen if the U.S. adopted such a system. In particular, I wanted to look at the intersection of anonymity and compensation, something that cannot be done in many of these other countries where compensation for sperm and egg donors is prohibited.

Today I posted online (downloadable here) the first published paper from this project, Can You Buy Sperm Donor Identification? An Experiment, co-authored with Travis Coan, and forthcoming in December 2013 in Vol. 10, Issue 4, of the Journal of Empirical Legal Studies.

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Applying Information Privacy Norms to Re-Identification Demonstrations (Re-Identification Symposium)

This is the first post in Bill of Health‘s symposium on the Law, Ethics, and Science of 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 (or by clicking on the “Re-Identification Symposium” category link at the bottom of any symposium post). —MM

By Stephen Wilson

I’m fascinated by the methodological intersections of technology and privacy – or rather the lack of intersection, for it appears that a great deal of technology development occurs in blissful ignorance of information privacy norms.  By “norms” in the main I mean the widely legislated OECD Data Protection  Principles (see Graham Greenleaf, Global data privacy laws: 89 countries, and accelerating, Privacy Laws & Business International Report, Issue 115, Special Supplement, February 2012).

Standard data protection and information privacy regulations world-wide are grounded by a reasonably common set of principles; these include, amongst other things, that personal information should not be collected if it is not needed for a core business function, and that personal information collected for one purpose should not be re-used for unrelated purposes without consent. These sorts of privacy formulations tend to be technology neutral; they don’t much care about the methods of collection but focus instead on the obligations of data custodians regardless of how personal information has come to be in their systems. That is, it does not matter if you collect personal information from the public domain, or from a third party, or if you synthesise it from other data sources, you are generally accountable under the Collection Limitation and Use Limitation principles in the same way as if you collect that personal information directly from the individuals concerned.

I am aware of two distinct re-identification demonstrations that have raised awareness of the issues recently.  In the first, Yaniv Erlich used what I understand are new statistical techniques to re-identify a number of subjects that had donated genetic material anonymously to the 1000 Genomes project. He did this by correlating genes in the published anonymous samples with genes in named samples available from genealogical databases. The 1000 Genomes consent form reassured participants that re-identification would be “very hard”. In the second notable demo, Latanya Sweeney re-identified volunteers in the Personal Genome Project using her previously published method of using a few demographic values (such as date or birth, sex and postal code) extracted from the otherwise anonymous records.

A great deal of the debate around these cases has focused on the consent forms and the research subjects’ expectations of anonymity. These are important matters for sure, yet for me the ethical issue in re-anonymisation demonstrations is more about the obligations of third parties doing the identification who had nothing to do with the original informed consent arrangements.  The act of recording a person’s name against erstwhile anonymous data represents a collection of personal information.  The implications for genomic data re-identification are clear.

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Caplan: Stop Critiquing the DSM 5

Art Caplan has a new column out in Time that takes a different stance on the DSM-V, compared to all the criticism the revisions have recently received:

The critics are going way too far. The DSM is often described as “the bible of the mental health field”—an unfortunate misnomer that leaves it open to attack. It should really be called “The best we know so far about mental disorders” or perhaps “Our best effort to properly classify complicated human behavior.”

But a bigger problem is that the editors don’t know how to defend against the attacks.

Read the full column here.  And some competing commentary here and here.

Politics and Science

By Joanna Sax

On April 29, Scott Burris blogged about a new bill that would allow Congress to set the scientific agenda, which would replace the traditional peer review process.  I echo his expressed concerns, but want to add more.  The idea that politicians, and not scientists, could determine the advancement of science is, frankly, a disaster.  In the past we have seen political leaders spar with scientists over many things – such as whether the earth is round, whether the earth is the center of the universe, etc.  If scientists did not or could not answer those questions, we might think we are walking on a flat earth.

Even now, there is a strong interaction between politics and science.  Evolution, a scientific theory with unequivocal consensus among the scientific community, still faces political opposition.  Recently, I’ve been thinking and writing in this area, that is, the interaction of politics and science.  Questions for scientific inquiry should be determined by scientists.  How we allocate and manage our resources requires, as others have argued, experts in many areas, including economics, management, and public policy.

To look at the interaction of science and politics, I conducted an empirical analysis comparing the type of information communicated to the public versus the consensus in the scientific community to determine whether politics is playing a role in scientific inquiry.  The study centers on the debate regarding the funding of embryonic stem cell research.  If you are interested in this area, please check out a recent draft here.  It’s an early draft and I welcome comments – you can email comments to me at jsax@cwsl.edu

Sex, People with Disabilities, Prostitution, and Universal Health Care: Reflections on “The Sessions”

[Cross-Posted at PrawfsBlawg]

One of my favorite initiatives at Harvard Law School, where I teach, is that faculty members get to offer an optional 10-12 student not-for-credit “First-Year Reading Groups” on a topic of interest to them that is related to law in some way but not too law-class like. I’ve taught a reading group on bioethics and law through film that pairs films with papers/topics in bioethics (e.g., A.I. with readings on personhood, Minority Report and neuroscience and law and predicting criminality, Dirty Pretty Things and organ sale and exploitation, The Constant Gardener with clinical trials in the developing world, Eternal Sunshine for the Spotless Mind and therapeutic forgetting and “cosmetic neurology” and many others…)

Next year I will add The Sessions, a film I found very enjoyable starring John Hawkes, Helen Hunt, and William H. Macy from last year that I also found very bioethically interesting. The film is based on a true story and follows Mark O’Brien, a poet who lives in an Iron Lung due to complications from Polio. After unsuccessfully proposing to his caretaker, and believing the end of his life may be nearing, he decides he wants to lose his virginity. He hires Cheryl Cohen-Greene, a professional sex surrogate, who will offer him a maximum of six sessions but makes clear to him this is therapy not romance. I will stop there to avoid ruining the film, but on to the bioethics…

There are fairly clear issues raised about commodification, exploitation, the difference between sex therapy and prostitution, that I have written about in various forms in various places. These are certainly interesting issues but familiar enough. What the film newly prompted me to think about, though, is actually universal health care. In particular, as I have written about indirectly in a couple of papers, what would some of the most prominent theories explaining why we need universal health care say about whether the state should pay for sex therapy (or perhaps even prostitution) for people with disabilities like Mark who find themselves otherwise unable to have sex?

For example, in his wonderful book Just Health, my colleague Norman Daniels, coming from a more Rawlsian tradition (i.e., a liberal tradition focused on promoting liberty and distributive justice through giving priority to the worst-off), grounds the state’s role in promoting health in the obligation, as a matter of political justice, to ensure access to the “normal opportunity range” to pursue the “array of life plans reasonable persons are likely to develop for themselves.” Although Daniels’ focus is on health care, it seems to me that sexual satisfaction is also part of that normal opportunity range and part of a life plan most of us would like to pursue.

Similarly, Martha Nussbaum in her great book Frontiers of Justice, writing from a more aretaic (i.e., Aristotelian, focusing on character and virtue) perspective, has argued that the state’s role is to enable human flourishing by raising people above the threshold level on a number of “capabilities.” Among these she mentions “bodily integrity,” as including “having opportunities for sexual satisfaction and for choice in matters of reproduction.” I have previously discussed how this kind of approach may justify funding reproductive technologies, but it seems to me as though it also fairly directly establishes an argument for funding Mark’s attempts to lose his virginity.

Now this is meant to be provocative, of course. And for some this is no doubt a reductio ad absurdum against universal health care. Fair enough. But for those who believe there is a moral case for funding universal health care, does the argument also lead to funding these kinds of sex therapies? Health is important, of course, but let’s be frank (and my parents can stop reading at this point) so is sexual satisfaction, and both seem to me essential parts of the normal opportunity range and/or human flourishing.

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The High Cost of Profiting from Student Loans

By Ryan Abbott

I read an article recently which stated that the federal government is making a 51 billion dollar profit this year from student loan borrowers. That’s more annual profit than any private American business makes. Profit margins are up thanks to record interest rates and aggressive collection policies.

Having the government make money off of students like this strikes me as bad policy—particularly with regards to student health professionals. Medical school is an expensive proposition; the cost of attending medical school has been rising for the past 13 years, and the average medical school graduate leaves school with $166,750 in debt. That doesn’t take into account undergraduate or other debt, and a significant portion of graduates end up owing far in excess of that amount. Ben Bernake testified before Congress last year that his son was on track to leave med school with $400,000 in loans!

Systematically burdening medical school graduates with debt seems almost calculated to drive doctors away from primary care and into higher paying specialties. That’s unfortunate because research demonstrates that a greater availability of primary care physicians results in better public health outcomes. The U.S. already has a surplus of specialists but not primary care physicians. Read More

HIPAA and the Medical Records of Deceased Nursing Home Patients

By Leslie Francis

[this is a cross post from HealthLawProf]

Warning: some of this post is HIPAA-wonky. But read on: the punch line is that HIPAA does not protect the living or the dead from blanket release of medical records to their personal representatives—unless state law provides otherwise or patients have thought to specify in advance that they do not want anyone to see the record or parts of it and state law gives them this opportunity. This means that the default position is that personal representatives may see highly sensitive health information, including mental health records or sexual or reproductive histories: veritable skeletons in family medical closets.

In an important recent decision, the 11th Circuit has held that the federal Health Insurance Portability and Accountability Act (HIPAA) preempts a Florida statute that gave spouses and other enumerated parties the right to request the medical records of deceased nursing home residents. Opis Management Resources v. Secretary, Florida Agency for Health Care Administration, 2013 U.S. App. LEXIS 7194 (April 9, 2013). The nursing homes had refused to respond to requests for records made by spouses and attorneys-in-fact, arguing that these requesters were not “personal representatives” under Florida law. The requesters filed complaints with HHS’s Office for Civil Rights, which determined that the refusals were consistent with HIPAA. The Florida Agency for Health Care Administration issued citations against the homes for violating Florida law, and the homes went to court seeking a declaratory judgment that the Florida statute was preempted by HIPAA.

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