The Faculty Lounge

Call for Abstracts: Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies

An announcement from our friends at Harvard Law's Petrie-Flom Center

Conference date: May 17, 2019

Abstract Submissions Due: October 15, 2018

The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School is pleased to announce plans for our 2019 annual conference: “Consuming Genetics: The Ethical and Legal Considerations of Consumer Genetic Technologies.” This year’s conference is organized in collaboration with Nita A. Farahany, Duke Law School, and Henry T. Greely, Stanford Law School.

Conference Description: Breakthroughs in genetics have often raised complex ethical and legal questions. Many regard their genetic testing and sequencing as revealing something intensely personal and private. The questions raised by these technologies loom even larger as genetic testing is becoming more commonplace, affordable, and comprehensive. At the same time, advances in CRISPR and other related technologies raise anxieties about the implications of editing our own DNA. One can imagine a future when gene editing may become as widespread as genetic testing is today. As genetic technologies become more accessible to individuals, the ethical and legal questions around the consumer use of these technologies become more pressing. This conference will examine some of these issues.

The rise of genetic testing has allowed individuals to gain new insights into their unique makeup. Already the global genetic testing and consumer/wellness genomics market was valued at $2.24 billion in 2015 and is expected to double by 2025. Amazon noted that Ancestry.com’s DNA test kit was one of their best-selling products on cyber Monday of 2018. The availability of these technologies inspires patients to act proactively to avoid medical conditions, such as when actress Angelina Jolie pursued a double mastectomy after genetic testing revealed that she was in the highest risk category for developing breast and ovarian cancers. The rise of direct-to-consumer genetic testing kits raises questions about the appropriate setting for these activities, however. For example, the Food and Drug Administration expressed concern about 23 and Me’s initial product offering, noting that delivering health-related results directly to consumers might cause these individuals to draw the wrong medical conclusions.

The increased ease of genetic testing and sequencing has also led to a sharp increase in genetic data and the rise of precision medicine. The rise of genetic databases raises significant ethical questions, especially around privacy concerns. In an age where serial killers are caught because their relatives chose to submit DNA to a consumer genealogy database, is genetic privacy for individuals possible? The economics here are significant. Consider the increased value of Myriad’s database of variances of unknown significance after the Supreme Court in Association for Molecular Pathology v. Myriad Genetics held that isolated genes cannot be patented. Does the aggregation of data from genetic testing turn people into products by commercializing their data? How might this data reduce or exacerbate already significant health care disparities?

While gene editing tools such as CRISPR are not yet as widely available as genetic testing technology, in some parts of the world their availability is already spreading. There have been reports that Chinese scientists have used CRISPR-Cas9 technology to genetically engineer the cells of at least 86 patients. Companies in the United States and Europe are expected to begin treating patients with CRISPR-based therapies this year. Many countries have drawn a line against germline modification, but this prohibition may be strained if gene editing technology is widely disseminated. Before we reach that point, this is the time to consider what ethical and regulatory safeguards should be implemented for when the time comes.

The full call for abstracts and registration information are available here.

BioNews: Egg donors to challenge US payment rules in court

From BioNews:

Egg donors are suing the American Society for Reproductive Medicine (ASRM) and the Society for Assisted Reproductive Technology (SART) in a class-action lawsuit for setting a 'price cap' on compensation to egg donors. . . .

The guidelines, which have not been adjusted since they were first established by the ASRM in 2000, advise that reimbursement above $5000 for egg donation requires 'justification' and that compensation above $10,000 is 'beyond what is appropriate'. . . .

Despite these guidelines, compensation for donor eggs in the USA regularly goes up to $75,000 dollars and there are even reports of six-figure sums being paid out.

Law professor Kimberly Krawiec from Duke University, North Carolina, argued that the guidelines are a clear violation of the legislation against price-capping, and that if the subject had been anything except human eggs 'we wouldn't be having this conversation'.

In contrast, Professor of Bioethics Arthur Caplan at New York University said: 'Egg sale is not egg donation. Opening a free market in human eggs risks increasing bamboozlement of couples with phony eugenic promises of eggs that will result in beautiful geniuses and the risk of exploiting poor women dazzled by money into ignoring risk.'

I’ve seen no evidence that egg donor compensation “regularly” exceeds $75,000 in the US, though there may have been isolated cases. Admittedly, reliable data on egg donor compensation is pretty scarce, but the studies that are out there tend to suggest that most payments are under the $10,000 guidelines. See my earlier posts here and here, for example.

But I’m happy to see Art Caplan protecting young women and intended parents from the coercive effects of money, which apparently only begin at the $10,000 mark.

Related Posts:

The NY Times Weighs In On Egg Donor Price Fixing

If You Want A Market, Have A Market . . . Otherwise

“Feeble Even By Normal Litigation Standards”

Egg Donor Antitrust Suit In Today’s WSJ

Sunny Samaritans’ Suit Survives

ASRM Seeks Dismissal of Egg Donor Suit

Kamakahi v. ASRM et al. — Updates

Politics And Profits in The Egg Business (When Sunny Samaritans Sue, IV)

When Sunny Samaritans Sue, Part III

When Sunny Samaritans Sue, Continued

When Sunny Samaritans Sue

The Value of Smart Eggs

Some Heroes of the Sterilization Movement

Elizabeth Troutman and I have a paper up at ssrn on the North Carolina eugenics movement.  This was inspired by the North Carolina legislature's compensation program, but what we're really interested in (more than the contemporary movement for compensation) is to understand the movement in North Carolina.  How did the movement for sterilization arise, how was North Carolina largely a dependent variable in that national movement, and then how did it function in our state.  Getting at the last issue involves difficult questions, like who was selected for sterilization and how did the administrative state process petitions for sterilization.  To me one of the most haunting aspects of all of this is that the state supplied pre-printed forms to be used in preparing petitions for approval by the state Eugenics Board.  That is, the state was ready to assist -- indeed to push -- for sterilization.

But one of the most interesting aspects of this is that almost everyone who was approved for sterilization had either themselves "consented" or had family members who "consented."  And that raises a very important question of what "consent" looked like -- and just how the state coerced individuals and their family members to "consent."  This is hard to reconstruct now, because the individual records are sealed -- and even if they were open, it looks unlikely that they would show the level of coercion in much detail.  Many of the Eugenics Board's biennial reports reflect the concern over getting people to agree to sterilization.  They note in particular that men were particularly resistant -- and in fact over time, the percentage of men sterilized decreased dramatically.  Perhaps that reflects the increasing resistance of men; it may also reflect that over time the percentage of institutionalized people who were sterilized decreased, and men in the community were harder to coerce than women.  At any rate, the state was deeply interested in coercing individuals into accepting sterilization.

When Harvard Said No to Eugenics

Paul Lombardo of Georgia State Law School is one of my personal heroes, for everything he's done to promote the public memory of Buck v. Bell and his outstanding work on eugenics more generally.  And now I see that he has a new article out, "When Harvard Said No to Eugenics."  This combines -- get this -- eugenics and trusts and estates (and university curriculum, too).  It's the story of why Harvard rejected a testamentary gift from Philadelphia physician J. Ewing Mears and then the litigation in Philadelphia over what would happen to the gift.  There's a lot in there of interest, but one of the vignettes that I love the most is about a trust established in 1961 by psychologist that would give distributions to his sons based on their (and their wives) "E score," which I take it measured cognitive "fitness."  My gosh why haven't I heard this before -- that's deserves a spot somewhere in my trusts and estates course when I'm talking about bizarre dead hand control.

Anyway, it's a great article and well worth a look if your interests run to eugenics, trusts and estates, or university politics.

The illustration is a sign in Charlottesville, Virginia, which discusses Carrie Buck's case.

Update:  My friend Steven Garland at Wake Forest Law sent along this newspaper article about the eugenics trust established by Truman Lee Kelley's will.  (Kelley I now realize was an important psychologist; among other accomplishments, he was co-author of the Stanford Achievement Test.)  This is absolutely going into the trusts and estates course next spring.  From another article around this time, Professor Kelley's widow was quoted as saying, "We spend so much attention to our prize cattle, but we haven't paid too much attention to the human race."  More details are in this article, entitled "The Fitter, the Richer."

Eugenics PechaKucha?

A few weeks back when I was in the land of hoagies and Wawas (as Governor Romney called them when he was on the campaign trail in Pennsylvania), I stopped by the annual meeting of the Society for the Historians of the Early American Republic, which was meeting in Philadelphia.  

Little aside here -- my God, Philadelphia looks fabulous.  When I was growing up there in the 1970s (and in college there in the 1980s) it sure looked a lot different.  I remember thinking when I saw Rocky way back in, what was that 1976, that it made Philadelphia look better than it was.  That's saying something, I know.  In fact, it's saying a lot.  One of the things I did while in Philly was visit Dan Filler over at Drexel and he told me about all the development going on there -- including up on Fortieth and Lancaster.  My first reaction was, I remember when that was to be avoided even at high noon.  And west Philly past Fortieth Street -- that looks terrific, too.  It's been a long time since the Move tragedy -- we're coming up on thirty years next summer.  The world changes, often quickly.

While I'm thinking of Rocky I need to add that the area around the Art Museum looks great, too.  A few years back I visitied it with my favorite librarian and mentioned to her before we arrived that she'd see kids running up the steps in the front and doing their Rocky imitation.  Then when we arrived there, she said, "you're right!  They are doing their Rocky imitation."  I sort of smiled -- because though perhaps she found my prediction sort of impressive this didn't require a lot of, or really any, insight on my part.  I said, "well, every day of every year from morning to night since 1976 you'd see people doing that."

So much for reminiscing about old times.  SHEAR had a really fun panel where four presenters had twenty slides that they showed for twenty seconds each, it's called pechakucha.  I'd never heard of this presentation style before -- but now I realize everyone else knows about it.  Anyway, it was a ton of fun.  Sort of like Ted Talks meet twitter or speed dating meets the academy or some such.  The moderator had a great sense of humor and she said something like, "six minutes and forty seconds each ... I'm sure we can all survive that."  It worked fabulously well.  In fact, it was one of the best panels I've seen in years.  I think there were two reasons for this.  First it forced presenters to be super organized and know what they were going to say for each slide.  The compressed time forced presenters to be clear about their thesis, too.  Second, there's the added benefit that we hear a clear statement, some evidence, and move on to a new paper.  I told the moderator -- only half-jokingly afterward -- every paper should be delivered like that.  The more I think about this, the more I agree with that statement.  Papers that get right to the point -- and also use some pictures -- can really be good.   Plus, I have to confess, I often find papers don't have enough intellectual content to justify the full twenty or twenty-five minutes we give them.

Right now, though I'm preparing for a talk on the eugenics movement in North Carolina that I'm giving on Friday to public school teachers over in Raleigh, as part of a really exciting program that brings in a bunch of historians from colleges around the state and has them talk for an hour on their work.  Not quite sure that eugenics is the topic I know best these days, but it's certainly a topic of a lot of interest in this state.  So as I'm pulling my talk together I'm thinking I'd like to try a modified pecha kucha, where the slides change automatically, even if I'm not quite on the 20 second time frame.  I have a whole fifty minutes to fill up, so the slides couldn't shift that quickly -- but I am very intrigued by the idea of setting the slides to change automatically -- that'd keep me moving.

Still, I'll probably just settle for a bunch of slides that I manually advance; this ought to be fun, nevertheless, lots to talk about here from the early twentieth century ideal of science to the regulatory state and economic analysis in the early twentieth century and the pre-printed forms designed to make the life of government bureaucrats easier, to the shifting attitudes towards eugenics around World War II, to its decline.

The illustration is one of the images I'm using in my talk.  It's from Madison Grant's The Passing of the Great Race.

Update: here is a podcast of my talk on Eugenics.  And here is a CLE talk on North Carolina's eugenics movement, which I presented in February 2015.

Would Marlise Munoz's Fetus Have Survived? Should It Have?

This is post is part of The Bioethics Program’s ongoing Online Symposium on the Munoz and McMath cases, which I've organized, and is cross-posted from the symposium. To see all symposium contributions, in reverse chronological order, click here.

Had the hospital not relented and removed the ventilator from Marlise Munoz's body, could the Munoz fetus have been brought to term, or at least to viability? And if so, would the resulting child have experienced any temporary or permanent adverse health outcomes? Despite some overly confident commentary on both "sides" of this case suggesting a clear answer one way or the other—i.e., that there was no point in retaining the ventilator because the fetus could never be viable or was doomed to be born with catastrophic abnormalities; or, on the other hand, that but for the removal of the ventilator, the "unborn baby" was clearly on track to being born healthy—the truth is that we simply don't know.

Before getting into the limited available data about fetal outcomes in these relatively rare cases, a bit of brush clearing. The New York Times juxtaposed reports about possible abnormalities in the Munoz fetus with the hospital's stipulation about the fetus's non-viability in ways that are likely to confuse, rather than clarify:

Lawyers for Ms. Muñoz’s husband, Erick Muñoz, said they were provided with medical records that showed the fetus was “distinctly abnormal” and suffered from hydrocephalus — an accumulation of fluid in the cavities of the brain — as well as a possible heart problem.

The hospital acknowledged in court documents that the fetus was not viable.

Whether intentionally or not, the nation's newspaper of record implies — wrongly, I think — that the hospital conceded that the fetus would never be viable because of these reported abnormalities. In court, the hospital and Erick Munoz stipulated to a series of facts, including that Marlise was then 22 weeks pregnant and that "[a]t the time of this hearing, the fetus gestating inside Mrs. Munoz is not viable" (emphasis added). The hospital conceded nothing at all about any fetal abnormalities. In short, the Times, and many other commentors, have conflated "non-viability" as a function of gestational age with "non-viability" as a way of characterizing disabilities that are incompatible with life. As I read this stipulation, the hospital was not at all conceding that the fetus would never have been viable, had the ventilator remained in place. Rather, given the constitutional relevance of fetal viability, the hospital was merely conceding the banal scientific fact that the Munoz fetus was, at 22 weeks, not currently viable. There is nothing surprising in the least about the hospital's "concession" about "viability" in the first sense, above: 22-week fetuses are generally not considered viable.

Swanson, Banking on the Body

Northeastern University law professor Kara W. Swanson's terrific study Banking on the Body: The Market in Blood, Milk, and Sperm in Modern America will be published by Harvard University Press this coming May.  Cribbing now from the HUP website:

Scientific advances and economic forces have converged to create something unthinkable for much of human history: a robust market in human body products. Every year, countless Americans supply blood, sperm, and breast milk to “banks” that store these products for later use by strangers in routine medical procedures. These exchanges entail complicated questions. Which body products are donated and which sold? Who gives and who receives? And, in the end, who profits? In this eye-opening study, Kara Swanson traces the history of body banks from the nineteenth-century experiments that discovered therapeutic uses for body products to twenty-first-century websites that facilitate a thriving global exchange.

More than a metaphor, the “bank” has shaped ongoing controversies over body products as either marketable commodities or gifts donated to help others. A physician, Dr. Bernard Fantus, proposed a “bank” in 1937 to make blood available to all patients. Yet the bank metaphor labeled blood as something to be commercially bought and sold, not communally shared. As blood banks became a fixture of medicine after World War II, American doctors made them a frontline in their war against socialized medicine. The profit-making connotations of the “bank” reinforced a market-based understanding of supply and distribution, with unexpected consequences for all body products, from human eggs to kidneys.

Ultimately, the bank metaphor straitjacketed legal codes and reinforced inequalities in medical care. By exploring its past, Banking on the Body charts the path to a more efficient and less exploitative distribution of the human body’s life-giving potential.

I read an early draft of this and I have to say that it's a terrific linking of legal history with the history of science.  And there are some unexpected twists to this book, too -- like how ideas about eugenics and immigraiton affected the development of milk banks.  It's really interesting to see how Swanson mixes all sorts of ideas into this story.  I think you'll enjoy it a great deal, even if you work in areas outside of property and technology.

In Memoriam: Adrienne Asch

I'm sorry to report that Adrienne Asch, director of the Center for Ethics at Yeshiva University and the Edward and Robin Milstein Professor of Bioethics, died yesterday of cancer. A social psychologist by training (but no relation to Solomon Asch), Professor Asch's scholarly focus was the ethical, legal, and social implications of human reproduction, especially as it intersects with disability studies. An interdisciplinary scholar (as most bioethicists are), she taught courses at Wurzweiler School of Social Work, Cardozo School of Law, and Albert Einstein College of Medicine.

I didn't always agree wth Adrienne, but she was an important scholar. As Sam Bagenstos noted, her death is "a huge loss for the disability world." Among other things, she challenged pro-choice scholars and activists to rethink the implications of some of their policies and theories for people with disabilities in present and future generations. Here is one example of many.

Adrienne was also a lovely person. Some years ago, I picked her up from Wellesley (where she then taught) and drove her to Dartmouth (where I was a college senior) for a brief visit. It was, from start to finish, an epic fail on my part. In my defense, her assistant gave me terrible directions, I was then unfamiliar with the joy that is Boston rush "hour" traffic (including the fact that it begins at 3pm and lasts until 7pm), and this was before either cell phones or GPS. Nevertheless, what was supposed to be a three-hour drive that left time for her to change clothes at the hotel before her first talk became a four-hour tour during which I grew increasingly anxious about the prospects of getting her to the church on time, as it were. Adrienne was blind (hence my driving her), and this raised the additional issue of what to tell her, and when, about our travels. Ever the intellectual and mentor, as soon as she got into the car, she wanted to hear about the honors thesis I was writing. Alas, I turned out to be utterly incapable of navigating Boston's traffic and discussing French existentialism at the same time, and soon we were hopelessly lost. I stopped at a gas station for directions (remember when you had to do that?), but by then we had hit rush hour traffic. We finally reached the highway and I managed to make up some time. As we discussed all manner of topics bioethical, I did the math and figured that if I, ahem, flirted with the speed limit, I could just have her to her talk on time.

The New Hampshire state police were not accommodating of this plan, however. Mere yards from our final exit I saw flashing lights in my rearview mirror. Feeling the car slowing down as I pulled over, Adrienne asked brightly, "Oh, are we there?" Mortified, I told her that no, in fact, I was being pulled over for speeding and that we would now certainly be at least a few minutes late for her talk. She would have been well within her rights to be furious with me, but was instead remarkably understanding. (The administrative director of Dartmouth's Ethics Institute, by contrast, chided me for acting unethically by speeding.) Here's a great interview with Adrienne that captures some of her personality, as well as her views about disability and her experiences living with a disability.

Yeshiva University's notice of Adrienne's death, along with funeral and shiva details, is here. Tributes are being collected here. She will be missed.

[Cross-posted at Bill of Health]

(Taboo) Science, Policy & the Importance of Good Science Communication: Redux

In late May, I wrote the following:

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" — 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.

I had no role in the GWAS itself; that credit goes to SSGAC’s extraordinarily meticulous scientists. I did, however, have a strong hand in the FAQs. And so I am really pleased that in a new editorial, the editors of Nature (not for nothing, Science’s main competitor) highlighted our FAQ as an example of best practices in behavioral genetics research and science communication. They write:

For clarity, scientists would do well to follow the example of the Social Science Genetic Association Consortium. In June, this group published a paper on genetic variants associated with educational attainment (C. A. Rietveld et al. Science 340, 1467–1471; 2013). Accompanying this was a nine-page Frequently Asked Questions document that, in plain, easy-to-understand language, addressed such questions as why the researchers did the study, what they found and what the implications of the work are — and are not (see go.nature.com/7mov2j). The document spelled out that the consortium had not found ‘the gene’ for educational attainment, that each genetic marker found has only a very small effect on length of schooling, and that any policy response based on that single study would be premature.

Scientists cannot be held responsible every time someone misinterprets their work. But simple steps such as these could help to prevent and address some of the potential distortions of behavioural genetics — and could help to ensure that society continues to support the work.

For more on taboo science—including IQ, race, violence, and sexuality—see Erika Check Hayden’s accompanying article, which discusses our Science GWAS in the IQ category and (elsewhere in the article) quotes Duke lawprof (and new Conspirator!) Nita Farahany. Now if we could only get popularizers of science to understand that their lay audience will rarely know that they are "oversimplifying" that science.

[Cross-posted at Bill of Health]

North Carolina Eugenics Compensation Act

Here is the North Carolina Eugenics Compensation Act.  It's codified in title 143b of the North Carolina General Statutes.  This will be administered by the Office of Justice for Sterilization Victims.

Part 30. Eugenics Asexualization and Sterilization Compensation Program.

§ 143B-426.50.  (For expiration date, see note) Definitions.

As used in this Part, the following definitions apply:

(1)        Claimant. - An individual on whose behalf a claim is made for compensation as a qualified recipient under this Part. An individual must be alive on June 30, 2013, in order to be a claimant.

(2)        Commission. - The North Carolina Industrial Commission.

(3)        Involuntarily. - In the case of:

a.         A minor child, either with or without the consent of the minor child's parent, guardian, or other person standing in loco parentis.

b.         An incompetent adult, with or without the consent of the incompetent adult's guardian or pursuant to a valid court order.

c.         A competent adult, without the adult's informed consent, with the presumption being that the adult gave informed consent.

(4)        Office. - The Office of Justice for Sterilization Victims.

(5)        Qualified recipient. - An individual who was asexualized involuntarily or sterilized involuntarily under the authority of the Eugenics Board of North Carolina in accordance with Chapter 224 of the Public Laws of 1933 or Chapter 221 of the Public Laws of 1937.  (2013-360, s. 6.18(a).)

 § 143B-426.51.  Compensation payments.

(a)        A claimant determined to be a qualified recipient under this Part shall receive lump-sum compensation in the amount determined by this subsection from funds appropriated to the Department of State Treasurer for these purposes. Except as provided by the succeeding sentence, the amount of compensation for each qualified recipient is the sum of ten million dollars ($10,000,000) divided by the total number of qualified recipients, and all such payments shall be made on June 30, 2015. The State Treasurer shall reduce the ten million dollars ($10,000,000) by holding out a pro-rata amount per claimant for any cases in which there has not been a final determination of the claim on June 30, 2015. Payments made to persons determined to be qualified claimants after that date shall be made upon such determination, and if after final adjudication of all claims there remains a balance from the funds held out, they shall be paid pro-rata to all qualified claimants.

(b)        If any claimant shall die during the pendency of a claim, or after being determined to be a qualified recipient, any payment shall be made to the estate of the decedent.

(c)        A qualified recipient may assign compensation received pursuant to subsection (a) of this section to a trust established for the benefit of the qualified recipient.  (2013-360, s. 6.18(a).)

§ 143B-426.52.  Claims for compensation for asexualization or sterilization.

(a)        An individual shall be entitled to compensation as provided for in this Part if a claim is submitted on behalf of that individual in accordance with this Part on or before June 30, 2014, and that individual is subsequently determined by a preponderance of the evidence to be a qualified recipient, except that any competent adult who gave consent is not a qualified recipient unless that individual can show by a preponderance of the evidence that the consent was not informed.

(b)        A claim under this section shall be submitted to the Office. The claim shall be in a form and supported by appropriate documentation and information, as required by the Commission. A claim may be submitted on behalf of a claimant by a person lawfully authorized to act on the individual's or the individual's estate's behalf.

(c)        The Commission shall determine the eligibility of a claimant to receive the compensation authorized by this Part in accordance with G.S. 143B-426.53. The Commission shall notify the claimant in writing of the Commission's determination regarding the claimant's eligibility.

(d)       The Commission shall adopt rules for the determination of eligibility and the processing of claims in accordance with G.S. 150B-21.1. Notwithstanding G.S. 150B-21.1(d), the rules adopted pursuant to this section shall expire on the earlier of the date all claims made under this section are finally adjudicated or June 30, 2018.  (2013-360, s. 6.18(a); 2013-410, s. 40.)

 

§ 143B-426.53.  Industrial Commission determination.

(a)        The Commission shall determine whether a claimant is eligible for compensation as a qualified recipient under this Part. The Commission shall have all powers and authority granted under Article 31 of Chapter 143 of the General Statutes with regard to claims filed pursuant to this Part.

(b)        A deputy commissioner shall be assigned by the Commission to make initial determinations of eligibility for compensation under this Part. The deputy commissioner shall review the claim and supporting documentation submitted on behalf of a claimant and shall make a determination of eligibility. In any case where the claimant was a competent adult when asexualized or sterilized, the burden is on the claimant to rebut the presumption that the claimant gave informed consent. If the claim is not approved, the deputy commissioner shall set forth in writing the reasons for the disapproval and notify the claimant.

(c)        A claimant whose claim is not approved under subsection (b) of this section may submit to the Commission additional documentation in support of the individual's claim and request a redetermination by the deputy commissioner.

(d)       A claimant whose claim is not approved under subsection (b) or (c) of this section shall have the right to request a hearing before the deputy commissioner. The hearing shall be conducted in accordance with rules of the Commission. For claimants who are residents of this State, at the request of the claimant, the hearing shall be held in the county of residence of the claimant. For claimants who are not residents of this State, the hearing shall be held in Wake County or at a location of mutual convenience as determined by the deputy commissioner. The claimant shall have the right to be represented, including the right to be represented by counsel, present evidence, and call witnesses. The deputy commissioner who hears the claim shall issue a written decision of eligibility which shall be sent to the claimant.

(e)        Upon the issuance of a decision by the deputy commissioner under subsection (d) of this section, the claimant may file notice of appeal with the Commission within 30 days of the date notice of the deputy commissioner's decision is given. Such appeal shall be heard by the Commission, sitting as the full Commission, on the basis of the record in the matter and upon oral argument. The full Commission may amend, set aside, or strike out the decision of the deputy commissioner and may issue its own findings of fact, conclusions of law, and decision. The Commission shall notify all parties concerned in writing of its decision.

(f)        A claimant may appeal the decision of the full Commission to the Court of Appeals within 30 days of the date notice of the decision of the full Commission is given. Appeals under this section shall be in accordance with the procedures set forth in G.S. 143-293 and G.S. 143-294.

(g)        If at any stage of the proceedings the claimant is determined to be a qualified recipient, the Commission shall give notice to the claimant and to the Office of the State Treasurer, and the State Treasurer shall make payment of compensation to the qualified recipient or a trust specified under G.S. 143B-426.51(b).

(h)        Decisions and determinations by the Commission favorable to the claimant shall be final and not subject to appeal by the State.

(i)         Costs under this section shall be taxed to the State.  (2013-360, s. 6.18(a).)

§ 143B-426.54. Office of Justice for Sterilization Victims. 

(a) There is created in the Department of Administration the Office of Justice for Sterilization Victims.

(b) At the request of a claimant or a claimant's legal representative, the Office shall assist an individual who may be a qualified recipient to determine whether the individual qualifies for compensation under this Part. The Office may assist an individual filing a claim under this Part and collect documentation in support of the claim. With the claimant's consent, the Office may represent and advocate for the claimant before the Commission and may assist the claimant with any good-faith further appeal of an adverse decision on a claim. 

(c) The Office shall plan and implement an outreach program to attempt to notify individuals who may be possible qualified recipients. (2013-360, s. 6.18(a).) 

§ 143B-426.55. Confidentiality.
Records of all inquiries of eligibility, claims, and payments under this Part shall be confidential and not public records under Chapter 132 of the General Statutes. (2013-360, s. 6.18(a).)

§ 143B-426.56. Compensation excluded as income, resources, or assets.
(a) Any payment made under this section shall not be considered income or assets for purposes of determining the eligibility for, or the amount of, any benefits or assistance under any State or local program financed in whole or in part with State funds.
(b) Pursuant to G.S. 108A-26.1, the Department of Health and Human Services shall do the following:
(1) Provide income, resource, and asset disregard to an applicant for, or recipient of, public assistance who receives compensation under this Part.   The amount of the income, resource, and asset disregard shall be equal to the total compensation paid to the individual from the Eugenics Sterilization Compensation Fund.
(2) Provide resource protection by reducing any subsequent recovery by the State under G.S. 108A-70.5 from a deceased recipient's estate for payment of Medicaid-paid services by the amount of resource disregard given under subdivision (1) of this subsection.
(3) Adopt rules to implement the provisions of subdivisions (1) and (2) of this subsection. (2013-360, s. 6.18(a).)

§ 143B-426.57. Limitation of liability.
Nothing in this Part shall revive or extend any statute of limitations that may otherwise have expired prior to July 1, 2013. The State's liability arising from any cause of action related to any asexualization or sterilization performed pursuant to an order of the Eugenics Board of North Carolina shall be limited to the compensation authorized by this Part. (2013-360, s. 6.18(a).)

The image is the building where the North Carolina Sterilization Board met. 

Payments to North Carolina Sterilization Victims Getting Closer

Well, it looks like the state budget is going to set $10 million aside to compensate victims of the North Carolina sterilization program.  The best recent article on this appeared in Miami Herald yesterday.

As long-time readers of the faculty lounge may recall, we've been following the campaign for compensation for a while and also discussing the complexities of the North Carolina eugenics program, which started in the 1930s and continued well past the time it ended in many other states.  

The 2013 Senate bill to provide compensation is here.

Kudos to This American Life

A few weeks ago I blogged here about a recent episode of This American Life, "Dr. Gilmer and Mr. Hyde," about the quest of one Dr. Gilmer (Benjamin) to understand why another, beloved Dr. Gilmer (Vince), had brutally murdered his own father after hearing voices that compelled him to do so. The episode ends (spoiler alert) with the revelation that Vince suffers from Huntington's, a rare, neurodegenerative disease that causes progressive physicial, cognitive, and psychological deterioration.

Listeners, it seemed to me, could naturally conclude from the episode that it was Vince's Huntington's that had caused him to murder his father. That might or might not be true in this particular case. Huntington's can cause behavioral and mood changes, including irritability, aggression and belligerence. It can also cause (less often) psychosis. But even if Huntington's caused Vince to murder his father, or somehow contributed to the murder, the extreme violence that Vince displayed — strangling his father, then sawing off his father's fingertips to preclude identification — is in no way typical of the Huntington's population as a whole. And so what most troubled me about the episode was its failure to note just how rare this kind of extreme violence is among those with Huntington's, just as it is very rare among human beings generally. And so I wrote to TAL, requesting a clarification.

I'm happy to report that the TAL producer for the episode, Sarah Koenig — who had not intended to suggest any causal link between Vince's murder of his father and his Huntington's, much less between murder and Huntington's more generally — has issued a clarification on the show's blog, and promises to make a similar clarification in the episode itself, should they ever re-air it. Kudos to TAL, and many thanks to Sarah for being incredibly gracious in our exchanges.

One clarification deserves another. In my earlier blog post, I also worried that some listeners might  conclude that Vince's father was similarly driven to commit horrific acts of sexual abuse on Vince and his sister because he, too, was (presumably) suffering from Huntington's (an autosomal dominant genetic disease). Although I think that a listener who didn't know better could reasonably conclude that Huntington's causes people to become sexual predators almost as easily as they could conclude from the episode that Huntington's causes people to become murderers, nothing in the episode suggests that Sarah, Benjamin Gilmer, or anyone else at TAL believe that Huntington's causes sexual abuse, or that they intended for listeners to reach that conclusion. I regret anything in my earlier post that suggested otherwise.

Again, I'm very grateful to Sarah and everyone else at TAL for hearing me (and other listeners) out and for agreeing to make the clarification — and just in time for HD Awareness Month!

Great Gatsby and the 1920s version of Product Placement?

I mentioned yesterday the inept reference that Tom Buchanan made in The Great Gatsby to Lothrop Stoddard's The Rising Tide of Color -- which is really a scary book.  

Right now I want to focus on something else -- the publisher of Stoddard's book.  I've been wondering why Charles Scribner's published eugenics literature (in addition to Stoddard, they published Madison Grant's The Passing of the Great Race).  Perhaps they were publishing whatever they thought would sell?  Maybe there's something deeper here.  

But then I realized that Gatsby was also published by Scribner's!  So now I'm wondering if the reference to Stoddard's book (which Tom incorrectly referred to as written by Goddard, who was another of the writers on eugenics -- though his work was published by MacMillan) was really a product placement in the novel?  That is, was Fitzgerald writing an advertisement for his press' book into the novel?  I was talking with one of my students, Thomas Thurman, about this -- and he said, quite astutely, if Fiztgerald was serious about a product placement he would have given the author's correct name and the full title of the book.  Thomas might have added that he wouldn't have made Tom look like such a fool, too.  Though maybe this was Fitzgerald's effort to subtly influence readers?

Update:  I see that the Financial Times has the rundown on how the movie's pushing clothes and jewelry.  No word yet on whether The Rising Tide of Color appears in the movie.

Update 2: Holy Cow!  Later on in the novel, it turns out that Gatsby has the Stoddard Lectures, a series of books on travel by Lothrop Stoddard's father, John Stoddard.  (Never read, of course, because the pages were never cut.)  And guess what?  John Stoddard taught at Boston Latin School and you know what Lothrop's profession was?  Legal historian.  This deserves some more commentary down the road.

Update 3: You can see the handwritten page from Gatsby that deals with "Goddard" in the Princeton Library collections here.

Latest on North Carolina Sterilization Victim Compensation

Well, I have returned to Chapel Hill to find that there's talk again of compensation to North Carolina's sterilization victims.  Already there's opposition brewing in the North Carolina Senate, where last year's compensation movement ended.  According to one report, Senator Phil Berger said that "with budgetary constraints, it's not appropriate."  The first article I linked to gives a somewhat different take from Senator Berger -- that "There was no ability to develop consensus on one particular path forward."  Perhaps there's some possibility of trying to find some consensus on a good way to proceed -- maybe that would involve attention to the circumstances of individual sterilizations.  Or maybe that's just Senator Berger's way of saying that some people are opposed and until they change their mind -- which they're unlikely to do -- this will not pass the Senate.  Time will tell.  And as you might expect, I'll be following this story closely.

Taking a Measure of the Past and Present

Paul Lombardo, the Bobby Lee Cook professor of law at Georgia State, has a terrific op-ed, "When Heroes Stumble," over a controversy about an award given by the American Sexuallty Transmitted Diseases Association in the name of Dr. Thomas Parran.  Here's the beginning of Lombardo's essay: 

The American Sexually Transmitted Diseases Association faces a quandary. The name of Dr Thomas Parran, a 20th century hero in the field of sexually transmitted disease prevention, accompanies a prestigious award given by the organization annually. Members are now confronted with the unsettling realization that Parran, like many honored figures of the past, also had a less heroic side. It was already known that he presided over the Public Health Service in the early years of the infamous Tuskegee syphilis study; more recently, the world learned that the scandalous intentional infection studies in Guatemala after World War II also occurred on Parran’s watch. Material from the files of Dr John Cutler, who directed the Guatemala experiments, has provided more troubling details. It suggests that Parran not only knew the details of Cutler’s work but also endorsed it with full awareness of its ethical toxicity. Should Parran, a giant of the field, be banished from its Pantheon, or should his eponymous award remain despite the newly found stain on his reputation?

Read the rest here and more on the Parran Award controversy here.

The image is of the Buck v. Bell monument in Charlottesville, which I'm using because Lombardo wrote the leading book on the case and is a leader of the movement to recognize and atone for the tragedy of forced sterilization in the twentieth century. h/t to Greg Dorr, who's the author of another leading work on eugenics in the twentieth century, Segregation's Science.

"Endangered Gender" Symposium

Two of Regent University Law School's journals are sponsoring a one-day symposium starting the evening of Friday, February 15 and continuing until noon Saturday: Endangered Gender: A Discussion on Sex-Selective Abortion.

All the panelists should prove insightful but I'm personally looking forward to hearing from Prakash Tyagi, who has the distinction of coming the greatest distance to be part of the symposium. Prakash is the executive director of GRAVIS, an Indian NGO working with the marginalized rural population of the Indian state of Rajasthan, where sex-selective abortion is a significant problem. I came to know Prakash while I was teaching at the National Law University in Jodhpur, Rajasthan as a Fulbright Scholar. I am delighted that he will be able to attend this symposium and look forward to hearing his comments about the "on the ground" situation in his part of India.

The conference is free to all registrants and there are plenty of top-notch accommodations neaby. Let me know if you'd like to come and I'll steer you in the right direction.

Buck v. Bell Trivia

Seeing Dan Ernst's note at legal history blog about Victoria Nourse's article, "Buck v. Bell: A Constitutional Tragedy from a Lost World," reminds me that I want to ask a trivia question related to Buck.  When and by whom was Buck most recently was cited as a valid case?  I think the answer will not just surprise you; it will shock you (at least to timing it shocked me).

The illustration is the hospital building at the what was then known as the "State Colony for Epileptics and Feebleminded," where Carrie Buck was sterilized in the wake of Buck v. Bell.

Latest on the North Carolina Sterilization Victims Compensation Act

Thanks to Mark Bold I see that the House has just passed an act to compensation people sterilized under the authority of the North Carolina Eugenics Board.  Today's Reuters story quotes Republican Representative Paul Stam, the North Carolina House majority leader:

Whoever they are, they deserve compensation .... We owe it to them, not in a legal sense, but in a moral sense. It was a sad program that lasted for several decades and had its genesis in a philosophy that is alien to the American spirit.

Representative Tom Tillis focused on the state's role in making the case for payments: "We had elected officials and leaders who had the audacity to know what the great race was .... There are people living today, all around this community, who have had this done to them and we have a chance to put it at rest."

Next stop is the Senate.  As the Senate takes this up, I hope they will focus on a couple of key points -- that this was state action, done in most cases for the convenience of the state, so the state could save money; that many people at the time knew this was wrong, even though the dominant mindset in the state was that sterilization was for the improvement of the human race -- and in some cases the white race; and that compensation is only going to people who are still alive, so it goes to the most direct victims.  As to opposition at the time, here is a chapter from a book on sterilization in North Carolina published in 1950 that discusses the opposition to sterilization, particularly by people who're its likely victims.

If you'd like a brief sense of the sterilization mindset in North Carolina, here is a pamphlet published by the Eugenics Board, which details the case for sterilization and also contains the administrative forms at the end of the pamphlet, which show just how much this was turned into routine bureaucratic work.

My previous posts on North Carolina's history with sterilization and the movement for compensation are available here.

The Administrative Forms for Sterilization

Well, the hearing on the bill to provide compensation to sterilization victims went well.  Several survivors and family members spoke, as well as several middle school students.   As I was driving back with a couple of law students we remarked those students and their teacher really had their act together!

The committee had a thoughtful debate about the bill.  The anti-reparations arguments rested largely on this isn't the responsibility of the current generation (and also to some extent, a lot of other states did this, so North Carolina shouldn't be singled out).  That was countered by the argument that are people still living who are suffering as a result of the state's action.  I wasn't surprised by any of the arguments; but I was pleasantly surprised by the outcome.

The house judiciary committee passed the bill, so it's on its way.  Looks like this is actually going to make it -- and will be just another episode of realistic reparations.

Along the lines of the "this was done by the state" argument, I thought you might find the forms that the state prepared to facilitate the petitions for sterilization of particular interest.   The forms were reprinted in a lot of places, including a 1938 pamphlet from the Eugenics Board that made the case for sterilization.  It never ceases to surprise me how technology is harnessed to effect the ends of the state.  And how much those forms were designed to stream-line the process.  And perhaps you'd find also of interest the appendix to Moya Woodside's 1950 study of sterilization in North Carolina, Sterilization in North Carolina: A Sociological and Psychological Study, which tells the story of "illustrative cases" of people who were sterilized in the 1940s.

The illustration is the Judiciary Committee hearing, where Representative Larry Womble, who's been the champion of this issue for about a decade now, moved the bill.  This was his first appearance in the legislature, I think, since he was in a car accident last fall.

Woodside on Sterilization in North Carolina

Moya Woodside's book Serilization in North Carolina published by the University of North Carolina Press in 1950 as eugenics was losing support in many places is an important source of information on how the Eugenic Board operated and how people charged with enforcing the state's sterilization statute and those governed by it thought.  Here are the second chapter, the fourth chapter, and the fifth chapter.