A family of four, two parents and two children, walk down the beach together at sunset.

The (Ante-Mortem) Interest in Genetic Continuity

By Shelly Simana

Omri Shahar was killed in a car accident when he was 25 years old. At his death, Omri’s parents petitioned the Israeli family court for posthumous sperm retrieval. The request was approved yet, one year later, they submitted an additional request—to use the sperm to fertilize a donated egg, implant the embryo in a gestational carrier, and raise the child. The basis of their request was Omri’s interest in “genetic continuity.” This interest is about individuals’ desire to leave a “piece” of themselves in the world and maintain a chain of continuity. It is about perpetuating one’s genes to future generations as a liberal expression of personal identity and a communitarian expression of family heritage. Read More

Illustration of a pregnant Muslim woman in a hijab sitting cross-legged in front of plants

Egg Freezing Permissible in Islam, According to Egypt’s Dar Al-Ifta

By Sarah Alawi

Dar Al-Ifta, Egypt’s Islamic body, issued a statement earlier this month on the legality of egg freezing under Islamic law following a controversial Facebook post by an Egyptian woman, Reem Mahana, on her decision to freeze her eggs.

Mahana said she froze her eggs for “the simple reason” that she wants to build a family when the time is right: “I cannot guarantee when exactly I will get married… I totally reject the idea of getting married to any man [only] to have a child.”

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Black and white photograph of adult holding a baby's hand

On the Tyranny of Partners in Posthumous Reproduction Cases

By Shelly Simana

The topic of posthumous reproduction has produced great interest globally due to the fundamental dilemmas it raises. The most controversial cases are the ones in which there is no explicit consent on behalf of the deceased person for using his or her gametes after death. In those cases, courts try to trace the presumed intentions of the deceased person, heavily relying on testimonies of the deceased’s family members and friends.

I recently published an article about this topic, in which I advocate for a more permissive approach toward posthumous reproduction. In this blog post, I would like to focus on a particular issue—the permission for the deceased’s partner, but not the parents, to engage in posthumous reproduction.

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Man and woman on holding hands on a couch, pictured from the neck down

What Happens When Reproductive Tech Like IVF Goes Awry?

It sounds like the setup to a bad joke: Three couples walk into a fertility clinic. But the punch line—what happened to those families at one Los Angeles medical facility in August 2018—is no laughing matter. The embryos from two couples hoping to conceive were mistakenly implanted into a third patient. That third woman and her husband, both of Korean descent, suspected that something was amiss when their two newborns didn’t look anything like them.

DNA testing confirmed that Baby A and Baby B (as court documents called them) weren’t genetically related to either of the birth parents, or to each other—they were related to two other couples who had been seeking fertility treatments at the same clinic. The birth parents were forced to give up their “twins” to their respective genetic parents.

The other two couples, while granted the surprise of children they thought they’d never have, missed out on the experience of pregnancy and early bonding. One of the women explained her sense of loss: “I wasn’t there for his birth, I did not carry him, I did not feel him kick inside of me, I didn’t do the skin to skin, I didn’t breastfeed him.” The mix-up at CHA Fertility Clinic leaves all three couples bereft. They’re left to wonder what happened to their other embryos, and to worry whether their biological children might be born to someone else without them ever knowing.

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An embryologist pulls out of the dewar with liquid nitrogen straws with frozenn embryos and egg cells in infertility treatment clinic - Image

The Legal Limbo of Lost Embryos

Last summer, a group of cancer survivors and others struggling to have children held a memorial service for their “hopes and dreams lost.” That’s the message they had engraved on a bench in the Ohio cemetery where these would-be-parents-who-won’t mourned.

More than 4,000 of their frozen embryos and eggs were destroyed when a high-capacity freezer tank failed at University Hospitals Fertility Center in Cleveland one Saturday in early March 2018. Another thousand were lost the same weekend, after a similar malfunction at an unrelated clinic across the country, Pacific Fertility Center in San Francisco.

Some of those affected had made appointments to try to initiate pregnancies the very next week. All had undergone painful procedures and paid, in some cases, thousands of dollars to keep their materials suspended in liquid nitrogen at a constant −196°C. But that weekend in March, tank temperatures began rising, and by the time the Ohio lab technicians returned for their next shift, everything inside had thawed beyond rescue or repair. It’s not clear why remote alarms were turned off; investigations are ongoing. So far, only coordinated cyberattacks have been ruled out. Read More

ancestry dna kit box

Gamete Donor Anonymity is a Myth: Q&A With Seema Mohapatra

By some accounts, 26 million people have undergone direct-to-consumer (DTC) genetic or ancestry tests. While some of the results of these tests seem might seem obvious (I turned out to be half-Hungarian and half-Ashkenazi, to no one’s surprise), there have been a number of accounts in the media of test results that have been considerably more dramatic.

Some of the more shocking — and now shockingly common — scenarios are the ones in which a consumer finds out through a DTC test that they were donor-conceived, and that one or both of the parents who raised them are not their genetic relatives. Gamete donors, who often provide genetic material (eggs or sperm) with the promise of anonymity, are finding themselves the recipients of messages from genetic children they never intended to meet.

Gamete donors could argue that they have a right to privacy. But Prof. Seema Mohapatra suggests the idea of gamete donor privacy is no longer realistic, due to the state of genetic technology.

I sat down with Prof. Mohapatra to learn more about the many ethical and legal questions DTC genetic testing raises for donors, recipients, and clinics.

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image of a genetic screen

How Might we Approach Discussions on the Implications of Using Genetic Data from a Human Rights or Social Justice Perspective?

By Alicia Ely Yamin and Jonathan Chernoguz

To complement the Petrie-Flom Center’s annual conference this year, Consuming Genetics, the Global Health and Rights Project at Petrie-Flom (GHRP) convened a small meeting of feminists, students, and other activists. On May 16, Harvard University’s Global Health Education and Learning Incubator , which co-sponsors GHRP, hosted the forum in conjunction with Marcy Darnovsky and Katie Hasson of Center for Genetics and Society (CGS).

Focusing on “Gene Editing, Ethics, Rights and Health Equity Issues,” and in particular the irrevocability of germline gene editing, the meeting began with Marcy Darnovsky, Executive Director of CGS asking, “How might we begin the discussion from [the perspective of] human rights, feminism, equity, and social justice, rather than from the science and biotechnology?”

This question echoed some of those posed during the Consuming Genetics conference, for example, by Jonathan Kahn in interrogating the equivocation of social diversity and empirical diversity in genomic research.  Read More

Dov Fox on BYU Radio

dov fox headshotBill of Health contributor Dov Fox joined BYU radio’s Top of Mind with Julie Rose to discuss his new book, “Birth Rights and Wrongs: How Medicine and Technology are Remaking Reproduction and the Law,” and the implications of the largely unregulated U.S. fertility industry.

Across the country, more and more Americans choose to put off starting families, with many relying on the lucrative U.S. fertility industry for family planning when the time comes. Though a booming enterprise, the industry remains distinct from other medical practices: it offers patients little recourse for medical mistakes and misconduct. Read More

Illustration of mitochondrial donation

Time to Revisit the Prohibition on So-Called “Three-Parent IVF”?

In an editorial appropriately titled, “This Editorial Is Not About Designer Babies,” the New York Times supported efforts by the Petrie-Flom Center and suggested it was time for Congress to consider lifting the effective ban on mitochondrial replacement therapies — sometimes colloquially but inaccurately referred to as “three-parent IVF.”

The piece referred to the Petrie-Flom Center’s upcoming public event and Roundtable, where experts will have a general conversation about the state of the law in the U.S. and elsewhere and to, as a group, discuss whether the prohibition against MRT might be lifted and, if so, how that might be accomplished.

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Abstract representation of DNA double helix

Gene Editing and Intellectual Property: A Useful Mix?

The Health Policy and Bioethics Consortia is a monthly series that convenes two international experts from different fields or vantage points to discuss how biomedical innovation and health care delivery are affected by various ethical norms, laws, and regulations.

They are organized by the Harvard Medical School Center for Bioethics and the Program on Regulation, Therapeutics, and Law (PORTAL) at Brigham and Women’s Hospital, in collaboration with the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School. Support provided by the Oswald DeN. Cammann Fund at Harvard University.

A light lunch will be provided. This event is free and open to the public, but space is limited and registration is required. Please note that attendees will need to show ID in order to enter the venue. Register now!

 

One way of thinking about genome editing is through the lens of the legal and ethical obligations of ensuring the technology is deployed safely and accurately, for the betterment of human society.

Or, if that’s a mouthful for you, genome editing’s rights—and wrongs. Which brings me to a talk I’ll* be giving at Harvard Medical School on March 8: “Genome Editing: Rights and Wrongs” I feel obligated, however, to asterisk the personal pronoun (“I”) because, in truth, what I’ll be doing is sharing the stage with one the world’s most celebrated scientists, George Church, world-renowned bioethicist, Jeantine Lunshof, and moderated by health policy guru, Aaron Kesselheim. Read More