This American Life and Stigma

By Michelle Meyer

Update: This American Life has made a clarification. Please see this post for more.

Let me begin by saying how much I absolutely adore This American Life. I listen to it religiously. I particularly had been looking forward to the most recent pocast episode of TAL: Dr. Gilmer and Mr. Hyde. As the episode’s blurb teases, “Dr. Gilmer and Mr. Hyde” concerns a doctor — Benjamin Gilmer — who takes over the rural South Carolina practice of Vince Gilmer (no relation). Vince is no longer available to see patients because he is serving a prison sentence for killing his father. As Benjamin gets to know Vince’s — and now his — patients, he forms a picture of Vince that’s at odds with his status as a convicted father murderer. How could this doctor who was so devoted to his patients have so brutally murdered his own father?

This episode is right up my alley. True crime? Check. Forensic psychology? Check. The intersection of law and medicine? Yes, please. So when I awoke yesterday morning at 5 am and couldn’t go back to sleep, I eagerly cued up the podcast. The episode recounts, in TAL’s  typically-riveting fashion, the story of Benjamin’s search for the truth behind Vince’s murder of his father. I enjoyed every minute of the episode until the last five minutes or so, when I became troubled by one critical omission.

Spoilers  follow after the jump; listen to the episode first. Read More

Myriad (Gene Patent) Oral Argument and the “Lander Brief”

First, and unrelated to this post, I wanted to say that like everyone here in Boston (and it seems throughout the U.S.) my heart goes out to the folks injured by Monday’s blast and their friends and family.

Now on to the substance. I have participated in a number of Supreme Court amicus briefs  both in my life as a litigator and as an academic. In big name cases the Court is often inundated with them, and one can only hope that the brief is read, let alone put to good use. This is why I was incredibly happy and honored that the Supreme Court devoted a significant chunk of its oral argument time on Monday in the Association for Molecular Pathology v. Myriad Genetics, No. 12-398, the gene patent case,  to discussing the brief I authored with Gideon Schor and Vern Noviel on behalf of Dr. Eric S. Lander. As Nature reported on the argument:

“The justices seemed to have been heavily influenced by a friend-of-the-court brief filed by Eric Lander, genomics whiz and founding director of the Broad Institute in Cambridge, Massachusetts. The brief argued against a lower court’s ruling that a snippet of DNA isolated from its chromosome does not occur in nature and is therefore patentable. To the contrary, wrote Lander, isolated DNA fragments do exist and are found circulating free in the blood. Indeed, a search of two public databases of DNA sequence data obtained from fetal DNA circulating in maternal blood revealed fragments that contained the BRCA1 and BRCA2 genes. “I think that raised a whole new ‘oops’,” said Robert Cook-Deegan, a policy researcher who has studied the case at Duke University in Durham, North Carolina. The justices never heard a proper response to Lander’s argument from Myriad’s attorney, who seemed to have either misunderstood the Lander brief or confused it with another when questioned.”

I reproduce some snippets from the actual transcript below the fold discussing our brief and its significance for how the Court rules.

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John Robertson on Cohen and Adashi on Made-to-Order Embryos for Sale

By John Robertson

Glenn Cohen and Eli Adashi have an interesting Sounding Board piece in the latest NEJM[i] on made-to-order embryos for sale.  A California clinic offering this option has garnered enormous publicity.  It might, however, have stimulated more bioethical thinking than actual demand for its services.

On the bioethical side, Glenn and Eli survey the relevant issues and conclude that what is most “new and unique here is the lack of clear legal guidance as to the parentage of the embryos in question.”[ii]  My impression is different– existing laws give sufficient support about parentage, if anyone wants to use them.  The clinic creating the embryos from separate gamete donations will have dispositional control of them, but no parenting questions arise until the embryos are gestated and brought to term.  True, there are few state laws on embryo donation as such. But in states with no specific embryo donation laws, those who have commissioned gestation will most likely have rearing rights and duties once a child is born until they arrange for an adoption.[iii]

Nor would the gamete donors in such states be able to claim rearing rights or be subject to rearing duties after such a birth.   Most states recognize gamete donor relinquishment of rearing rights and duties in resulting children with their consent to donation.  After the birth of a child, the gamete donors ordinarily would have no right to change their mind and acquire rearing rights or be subject to rearing duties, whether the donation was of sperm or egg separately or both combined into an embryo.

One aspect of this transaction that is ethically unique is that divvying up embryos created from the same egg and sperm donor would lead to different recipients giving birth to full rather than half siblings, as is the usual situation with gamete donation (it could happen with excess embryos donated after successful IVF by an infertile couple, but that is rarer). Whether it creates a higher risk of full sibling consanguinity would depend on clinic practices in distributing embryos from the same batch to different recipients.  As Glenn and Eli note, donor registries might solve this problem, but none yet exist in the United States.

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New Paper in the New England Journal of Medicine “Made-to-Order Embryos for Sale — A Brave New World?”

The New England Journal of Medicine just published a new article by me (and my frequent co-author Dean Eli Adashi) entitled “Made-to-Order Embryos for Sale — A Brave New World?”  As we note in the article:

The proliferation of commercial gamete sources (e.g., sperm and oocyte banks) has opened the door to a made-to-order embryo industry in which embryos are generated with a commercial transaction in mind. This prospect of a for-profit embryo bank is no longer theoretical. Indeed, as recently as November 2012, the Los Angeles Times reported on one such clinic that “sharply cuts costs by creating a single batch of embryos from one oocyte donor and one sperm donor, then divvying it up among several patients.” The report went on to state that “the clinic, not the customer, controls the embryos, typically making babies for three or four patients while paying just once for the donors and the laboratory work.

The paper then analyses the legal and ethical issues raised by the development of these kinds of banks. In so doing, a key question we ask is how this practice is similar or different from embryo donation (sometimes called “embryo adoption”), the sale of sperm and eggs for reproductive purposes, and the use of sperm and egg to produce stem cell lines that require embryo destruction.

This one is sure to be controversial, and while this short piece in the New England Journal is now published I would love to hear readers’ thoughts as I may write more on the subject.

Introducing our Online Abortion and Reproductive Technology Symposium

[Editor’s Note: This is Glenn Cohen guest posting on behalf of Kim Mutcherson, what follows below is her post. I will be posting on behalf of several symposium contributors over the next few days.]

On Friday, April 5, a group of almost 30 (mostly legal) scholars gathered at Rutgers Law-Camden to have difficult conversations about abortion and assisted reproduction. The event, sponsored by Rutgers Law and the Law School Initiative of the Center for Reproductive Rights (https://reproductiverights.org/en/our-work/law-school-initiative) sought to initiate discussion about the seeming gulf between those working on issues related to abortion and those working on assisted reproduction and assisted reproductive technology (ART).  Friday’s conversation was the first of at least three planned events with the other two to be sponsored at some future point by the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at Harvard Law School and the Program for the Study of Reproductive Justice in the Information Society Project at Yale Law School. If the nature of the conversation at this kick-off event is a harbinger of things to come, I am anticipating that top-notch and cutting edge scholarship related to reproductive rights and reproductive justice will emerge from workshop participants.

While it might seem intuitive that scholars of reproduction would talk often, much of the work in this arena exists in silos. Those writing about abortion have plenty of work to do in keeping up with the flurry of state laws seeking to destroy what remains of Roe v. Wade in a post-Planned Parenthood v. Casey world. And those working in the world of assisted reproduction have to keep abreast of emerging science that is always light years ahead of what the law has done or seems capable of doing. As a consequence, opportunities to study the intertwining and divergence between the right to end a pregnancy and a right to create one are sparse.

And so, in the year that we commemorate the 40th anniversary of Roe, we engaged in a respectful, honest, and richly complex dialogue about the appropriate paradigm for understanding the right to abortion and the right to use assisted reproduction—liberty, equality or some new paradigm that we have yet to fully embrace or articulate.

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New Paper on Sperm Donor Anonymity and Mandatory Paternal Testing for Coital Sex

I have a new peer-commentary paper in the American Journal of Bioethics, entitled “Of Modest Proposals and Non-Identity: A Comment on the Right to Know Your Genetic Parents.”  This is a response to An Ravelingien and Guido Pennings’s very interesting article “The Right to Know Your Genetic Parents: From Open-Identity Gamete Donation to Routine Paternity Testing” in the same journal, wherein they argue that the same arguments underlying mandatory sperm donor identification should support a regime of mandatory routine paternity testing to deal with the phenomenon of misattributed paternity.

My new piece is behind a pay-wall, but if you’d like to read it shoot me an email as I have a limited number of “free passes” from the publisher. I have also written about these issues in greater depth in this article in the Georgetown Law Journal which is available for free download. Finally, I hope to soon blog about a new paper forthcoming in the Journal of Empirical Legal Studies and co-authored with Travis Coan, where we use experimental methods to examine whether reluctance to become a sperm ‘donor’ where identification is required can be overcome with increased payments to potential ‘donors’.

Henrietta Lacks, Publishing Genomes, and Family Vetos

Rebecca Skloot, author of the very interesting and well-written bestseller The Immortal Life of Henrietta Lacks — a book about the poor and badly treated black woman whose cells became the famous (and very heavily used) HeLa cells, medicine and the treatment of African-Americans, and who owns products derived from one’s genes — had an interesting op-ed in the New York Times on March 23, with the clever title The Immortal Life of Henrietta Lacks, the Sequel. As Skloot writes:

“On its own, the HeLa genome doesn’t say anything specific about Lacks: it’s a string of billions of letters that detail the genetic information that makes up a HeLa cell, which is useful for science. A news release from the European Molecular Biology Laboratory, where the HeLa genome was sequenced, said, “We cannot infer anything about Henrietta Lacks’s genome, or of her descendants, from the data generated in this study.”

But that’s not true. And a few scientists decided to prove it. One uploaded HeLa’s genome to a public Web site called SNPedia, a Wikipedia-like site for translating genetic information. Minutes later, it produced a report full of personal information about Henrietta Lacks, and her family. (The scientist kept that report confidential, sharing it only with me.) Until recently, few people had the ability to process raw genome data like this. Now anyone who can send an e-mail can do it. No one knows what we may someday learn about Lacks’s great-grandchildren from her genome, but we know this: the view we have today of genomes is like a world map, but Google Street View is coming very soon. . . .

After hearing from the Lacks family, the European team apologized, revised the news release and quietly took the data off-line. (At least 15 people had already downloaded it.) They also pointed to other databases that had published portions of Henrietta Lacks’s genetic data (also without consent). They hope to talk with the Lacks family to determine how to handle the HeLa genome while working toward creating international standards for handling these issues.

The publication of the HeLa genome without consent isn’t an example of a few researchers making a mistake. The whole system allowed it. Everyone involved followed standard practices. They presented their research at conferences and in a peer-reviewed journal. No one raised questions about consent.”

Skloot then quotes a number of scientists and bioethicists decrying the practice. I actually think things are not quite as Skloot sees them. Let me explain why:

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The U.S. Should Cover the Cost of IVF (for Gays and Lesbians Too)

By Dov Fox

Glenn Cohen and I make the case in this morning’s Huffington Post:

This week the United Kingdom joined the ranks of countries like Canada, Israel, and Sweden that provide in vitro fertilization (IVF) treatment to citizens under a certain age (42 in the U.K.) who can’t have children without it. That includes gays and lesbians. When it comes to helping people form the families they long for, the United States is woefully behind. The U.S. has among the lowest rates of IVF usage of any developed country in the world, owing in part to boasting the highest cost for the procedure, on average $100,000 for each successful pregnancy.

Among the handful of states that require insurers to cover IVF, many carve out exclusions for same-sex couples and people who aren’t married. These singles, gays, and lesbians are sometimes called “dysfertile” as opposed to “infertile” to emphasize their social (rather than just biological) obstacles to reproduction. The U.S. should expand IVF coverage for the infertile, and include the dysfertile too.

The U.S. Supreme Court has held that the inability to reproduce qualifies as a health-impairing disability under the Americans with Disabilities Act. The commitment to universal health care that we renewed in President Obama’s health reform act invites us to understand the infertile and dysfertile alike as needing medicine to restore a capacity—for “[r]eproduction and the sexual dynamics surrounding it”—that is, in the words of the Supreme Court, “central to the life process itself.”

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