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Rise of custom babies sets off ethics alarms

People visit U.S. for several controversial types of services

By Ariana Eunjung Cha, The Washington Post
Published: January 3, 2019, 6:02am
3 Photos
Francis Collins National Institutes of Health director
Francis Collins National Institutes of Health director Photo Gallery

Danielle Lloyd, a former Miss Great Britain and celebrity mother of four boys, wants to guarantee that her next baby will be a girl. So, she revealed in a TV interview last year, she’s planning to get pregnant through in vitro fertilization.

The news sparked an uproar in Britain, where screening embryos for gender is prohibited at IVF clinics. Unruffled, Lloyd, 35, began checking out clinics in the few places on the planet where the service is readily available: Cyprus, the United Arab Emirates — and the United States.

“I can see why people are against it, and I don’t want to upset anyone,” Lloyd said. “But I can’t see myself living not having a daughter when I know it’s possible.”

While many countries have moved in recent years to impose boundaries on assisted reproduction, the U.S. fertility industry remains largely unregulated and routinely offers services outlawed elsewhere. As a result, the U.S. has emerged as a popular destination for IVF patients from around the world seeking controversial services — not just sex selection, but commercial surrogacy, anonymous sperm donation and screening for physical characteristics such as eye color.

This freewheeling approach has been good for business; the U.S. fertility industry is estimated to be worth as much as $5.8 billion this year. But as technological advances outpace any social consensus on such forms of reproductive intervention, discomfort with the hands-off status quo is rising.

Last month, news that a U.S.-educated Chinese researcher had created the world’s first gene-edited infants reignited a debate over the morality of “designer babies.” Some scientific leaders blasted the effort, which purported to make the babies resistant to HIV infection, and urged the U.S. government to step in.

Condemnation

National Institutes of Health Director Francis Collins condemned the gene-editing experiment as an “epic scientific misadventure.” He wants to establish a forum for oversight and public debate about the technology and related areas of science.

Collins said he also is concerned about the rise in the screening of embryos for characteristics such as intelligence, physical appearance and gender. Though editing a baby’s DNA is fundamentally different from picking and choosing among embryos created by nature, the procedures raise similar ethical questions about manipulating human reproduction.

“IVF clinics have had pretty free rein, and some would look at their pathway as being a bit free and easy in terms of new developments,” Collins said, adding that U.S. clinics have “a bit of a reputation of being cowboys.”

“They help a lot of people … and that’s largely a good thing,” he said. “But one might wonder if there is a need for more oversight than we currently have.”

The story of how assisted reproduction escaped regulation in the United States begins in the 1990s, when national politics were riven by disputes over procreation, contraception and abortion. Abortion doctor David Gunn was killed by an antiabortion activist in 1993, and the nation’s abortion clinics were under siege.

Serious concerns

A panel of scientists, legal experts and ethicists convened by NIH released a report in 1994 on research involving human embryos. The report called for federal funding to explore this “sensitive and vital area of biomedical science.” It also emphasized the need for regulation and voiced “serious ethical concerns” about sex selection in IVF.

Gender selection is possible in IVF through a process known as preimplantation genetic diagnosis, or PGD. Clinicians take a single cell or a few cells from an embryo and use DNA probes to examine its genetic makeup.

While PGD is typically used to screen embryos for inherited diseases, it also can be used to identify embryos with characteristics parents find desirable. For example, deaf people and people with dwarfism may want children who share those traits. Other people may want a child who is a compatible tissue donor for a sick sibling.

PGD does not change the embryo but helps would-be parents choose which embryos to transfer to the womb — and which to discard.

The idea that embryos might be created and then destroyed as part of this new science did not sit well with religious conservatives, who believe that life begins at conception. So in 1995, Reps. Jay Woodson Dickey Jr., R-Ariz., and Roger Wicker, R-Miss., added a provision to an appropriations bill that did the opposite of what the NIH paper proposed. Instead of supporting research and government regulation, it prohibited the expenditure of federal funds for any research that involves the creation or destruction of human embryos.

The amendment was intended to help skittish lawmakers navigate a touchy issue, allowing them to vote against public funding for embryo research while permitting such research to continue in the private sphere.

The ban, which remains in effect, “laid the backdrop for a more hands-off regulatory approach,” said Michelle Bayefsky, a former bioethics fellow at NIH who has written a book about PGD.

The debate evolved very differently on the other side of the Atlantic. Like the United States, Britain put together an expert panel to study assisted reproduction. The panel suggested the establishment of a public body to oversee human embryo research, regulate fertility clinics and take the lead on debates about new technologies. Parliament concurred and in 1990 established the Human Fertilization and Embryology Authority, the first statutory body of its kind and a model emulated by other countries.

‘Stringent’ rules

Today, the HFEA is overseen by Peter Thompson, a career government official who previously worked in the Ministry of Justice and the Cabinet Office. Thompson directs a staff of 70 that includes clinic inspectors stationed throughout the country, and oversees a board of scientists, ethicists and theologians who debate the larger issues.

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“Our rules are stringent enough to provide public trust, and flexible enough to allow scientists to innovate,” said Thompson, who described his agency as “a bargain between science and society.”

Britain’s stance on “three-parent” babies offers an example of the HFEA’s approach. The treatment is offered only to women with serious diseases that could be transferred to a baby through mitochondria in their eggs. DNA from the mother is injected into an egg from a healthy donor. The egg is then fertilized with the father’s sperm, and the resulting embryo is genetically related to both parents.

In the United States, the legality of this procedure is unclear. Britain in 2017 became the first country to formally license the procedure — though only for women with heritable diseases. While no babies have been born yet, Thompson said several women are undergoing the procedure at Newcastle University.

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