Fox on Prenatal Genetic Testing

front-page story in today’s Sunday Boston Globe quotes Bill of Health blogger Dov Fox on whether the routine use of new prenatal blood testing could “‘bring a tendency to exclude rather than accommodate people whose abilities fail to meet [certain] demands'” of modern society or “‘exert[] social pressure on parents to terminate pregnancy for fear of criticism or reproach from people who regard the[ir] choice [to have a] child with a disability [] as negligent, or irresponsible.'”
If these non-invasive tests (which look at potentially unlimited amounts of fetal DNA) were able to provide genetic information for conditions beyond just sex and health, might we come to think in similar ways about children of “merely” average looks or normal height or ordinary intelligence? Dov explored this question and others in a talk that he gave as a 2006 summer fellow at the Petrie-Flom Center. His article is called Silver Spoons and Golden Genes.

Birth Control for Men?

By Dov Fox

We’re not talking vasectomies or condoms.

Medical Daily reports that the NIH has awarded a $4.7 million grant to come up with a “Pill” for men. Most previous attempts to develop such contraceptives used testosterone to reduce the number of sperm men produce. This one takes aim at its mobility instead, using a non-hormonal compound that promises fewer side effects, according to scientists. Clinical testing into its safety and efficacy, assuming the FDA grants permission, would take at least five to ten years before the agency could consider approving the drug for use.

The availability of male birth control would make it possible for men and women to share responsibility for contraception. Today, women alone shoulder the considerable physical and other burdens that come with the Pill. And only women enjoy the security that control of its use affords over the likelihood of unwanted pregnancy. Tomorrow, we could even things out a bit. That’d surely be a development worth embracing. Or would it? Sharing responsibility for contraception means leaving it to men to take the necessary measures to prevent the reproductive consequences that in our society fall far more heavily on women.

We might suppose that some such men, who have less at stake than their female partners, would be less vigilant about birth control and forget to take the pill. There is also evidence to suggest that other men might use greater control over conception for abusive purposes. A 2010 study found that 15% percent of respondents women ages 16-29 who sought care in several Northern California family planning clinics reported that their male partners had damaged condoms or otherwise sabotaged their birth control.*

Would birth control for men be cause for celebration, or concern? Would it revolutionize sexual equality, or change little at all?

*This “pregnancy coercion,” as the researchers call it, differs in respect of the gestation, abortion rights, and sex-differentiated social expectations involved from the reverse-gender cases that Glenn Cohen has analyzed in which courts “have imposed legal parenthood [] on fathers deceived into believing that their partners could not conceive” or under circumstances in which “conception took place without meaningful consent.”

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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The ADA and Declining Down Syndrome Birthrates

[Posted on behalf of Dov Fox]

Having a child is hard work. It can be especially taxing—“physically, emotionally, and of course, financi[]ally, to bring a child with [disabilities] . . . into the world and raise it,” as commentators have noted in response to an earlier version of this piece that Chris Griffin and I wrote yesterday on Huffington Post. So it is not difficult for many of us to sympathize with the genetic parents who, CNN reported later in the day, offered their surrogate $10,000 to have an abortion when they learned “the baby would need several heart surgeries” and “ha[ve] only about a 25% chance of having a ‘normal life.’”

At the same time, doctors and authors justly celebrate the increasing willingness of those who decide that, for them, it makes sense to bring a pregnancy to term after getting a positive test for a condition like Down syndrome. These advocates explain the perceived shift in social norms by noting that the landmark Americans with Disabilities Act (ADA) provides legal protections to combat employment discrimination and enhance access to public accommodations. What they fail to appreciate is that these protections have not always brought with them the anticipated acceptance of having a child with disabilities.

A study we published in 2009 reveals a 25 percent decline in Down syndrome birthrates nationwide after the first President Bush signed the ADA into law. Controlling for variables from maternal age and marital status to prenatal testing and access to abortion, we found that about 15 fewer children per 100,000 were born with Down syndrome after the law was passed. So here’s the puzzle: Why would fewer children be brought into the world just as they are being afforded greater opportunities in life?

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