Op-ed on Down Syndrome and Abortion

See this piece in Newsday by Valerie Karr. It begins:

Last weekend at my favorite ice cream shop, I met an adorable 4-year-old boy named Sully. He had bright blue, inquisitive eyes, a happy smile and, judging from his telltale facial features, Down syndrome.

Only weeks before I had read a staggering statistic: 92 percent of unborn children diagnosed with Down syndrome are now aborted. I don't normally get overly exercised about the issue of abortion, but this number struck me as I looked at Sully. With only 8 percent of prospective Down parents choosing to have their child, Sully may grow up with no peers to interact with in his life. Somehow, we are saying the lives of children with Down mean less than those of so-called normal children.

Admittedly, the economic costs of raising children with Down can be onerous. The emotional strain can cause rifts between parents. There can be serious medical complications. As a matter of fact, in a survey conducted by Brian Skotko at Harvard Medical School, 3,000 mothers receiving the news that their child would have Down syndrome reported that physicians expressed negative views about them continuing their pregnancies.

Fox and Griffin on the ADA's "Collateral Effects"

Up on SSRN: Dov Fox & Christopher Griffin have posted The Collateral Effects of Law on Social Behavior: The Case of Antidiscrimination Law and Selective Abortion. The abstract:

This Article explores the powerful ways in which changes in the law can bring about unexpected changes in social behavior that is unrelated to that which the law regulates. We puzzle through this unexamined phenomenon by considering the relation between a major antidiscrimination law, the Americans with Disabilities
Act (ADA), and a routine reproductive practice, selective abortion on the basis of Down syndrome. Our empirical analysis of U.S. natality data suggests that the ADA has the surprising effect of preventing the existence of the very class of people the law was intended to protect. We explain this paradox by showing how the ADA's implementation mechanism generates stigmatizing attitudes toward people with disabilities. The law's requirement that those seeking its protection prove the limitations caused by their disability does damage to our understandings and expectations about what it means to be disabled. Using formal regression analysis, we find suggestive evidence that the ADA significantly increased the incidence of decisions to terminate a pregnancy following a positive test for Down syndrome. We discuss the implications of this expressive externality for disability, reproduction, and antidiscrimination law in the United States.

NYT on Prenatal Testing for Down Syndrome, and Commentary

Today's New York Times contains this article on prenatal testing for Down syndrome. A key passage:

Until this year, only pregnant women 35 and older were routinely tested to see if their fetuses had the extra chromosome that causes Down syndrome. As a result many couples were given the diagnosis only at birth. But under a new recommendation from the American College of Obstetricians and Gynecologists, doctors have begun to offer a new, safer screening procedure to all pregnant women, regardless of age.

About 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion.

Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

Ann Althouse comments:

In the future, it seems, anyone taking care of a child with Down syndrome will be viewed as a saint... or, perhaps, misguided and foolish.

Dana Goldstein comments:

As anyone who's had their life enriched by a loved one with a disability can attest, these conversations are incredibly fraught. But without judging any family's choice to either end or continue such a pregnancy, the issues remain the same -- the right to choose an abortion and the freedom from coercive pressure. Expectant parents should be given information, resources, and support as they make these complex choices. But expect the antis to boil this issue down into a talking point and portray pro-choicers as mad scientists trying to genetically manipulate the human race.

I discussed some of these issues, and the problems they present for people like me who favor both disability rights and abortion rights, in this piece. There are a bunch of competing considerations here. When women choose to abort after receiving a diagnosis of Down syndrome, they often do so on the basis of misperceptions about the lives of people with that condition. Those misperceptions stem from and feed into a general societal view of people with disabilities as being less than fully worthy citizens. From a disability rights perspective, those are big problems. In principle, it makes sense that pregnant women whose fetuses have been so diagnosed should receive full information on the point -- that people with Down syndrome can be happy and productive members of a family and a community. But Goldstein is quite right that a strategy of abortion opponents (validated by the Supreme Court's reasoning in the recent Carhart case) is to pack increasingly burdensome and coercive requirements into the category of "informed consent." Expressed concern about disability rights could easily be used as a way of imposing yet more burdens under that heading. And I don't think disability rights advocates should be so happy with the message expressed by many of the folks who are urging women not to abort fetuses that have been diagnosed with Down syndrome -- a message that is, essentially, that it's really saintly of you to be the parent to a child with that condition. This is a hard issue, and, unfortunately, will be one of the next battlegrounds in the abortion rights wars.

Sheth on Wrongful Birth/Wrongful Life Actions

New on Westlaw: Darpana M. Sheth, Better off Unborn? An Analysis of Wrongful Birth and Wrongful Life Claims Under the Americans with Disabilities Act, 73 Tenn. L. Rev. 641 (2006). From the introduction:

A recent study shows that more than 80 percent of babies prenatally diagnosed with Down syndrome are aborted. In an age of increasing reliance on prenatal and genetic testing, should state tort law encourage reproductive choices that discriminate against offspring with actual or potential disabilities? Proponents of wrongful birth and wrongful life claims answer this question in the affirmative by supporting claims that allow monetary damages for the negligent deprivation of the choice to abort or not conceive a child with an actual or potential congenital disability. But the notion that one should be compensated under state tort law for the deprivation of the opportunity to prevent the birth of a child with disabilities is inherently incompatible with the ideals embodied in our nation's commitment to end discrimination against individuals with disabilities.

This Article argues that the genetic torts of wrongful birth and wrongful life violate the prohibition of discrimination against individuals with disabilities by public entities contained in Title II of the Americans with Disabilities Act. Although there has been some law review commentary on the torts of wrongful birth and wrongful life, especially in the context of federal abortion law, this Article is among the first to examine the viability of these claims under the Americans with Disabilities Act.

The title of this piece is strikingly similar to Adam Milani's piece on related issues, which everyone interested in these topics should read.

Dresser on Schiavo

My colleague Rebecca Dresser has just posted on SSRN her piece, Schiavo and Contemporary Myths About Dying, 61 U. Miami L. Rev. 401 (2007). The abstract:

When the Schiavo case burst onto the national scene, most of us assumed that everyone would see the case as we did. But instead, Schiavo showed that U.S. pluralism was alive and well in decisions about life-sustaining treatment. Schiavo demonstrated, too, that at least some of this pluralism reflects misguided myths about human life and death. In this essay, I examine the myths that Schiavo exposed. One such myth is that death with dignity is easily attainable in modern America, as long as people make living wills. Another myth is that only patients themselves are permitted to take quality of life into account when deciding about life-sustaining interventions. A third myth is that research advances are bringing an end to the difficulties of aging. To examine the myths, I draw on public commentary about Schiavo and on four texts published in 2005, when the case was in the headlines.

Disability Rights Hits TAPPED

Over at TAPPED, the blog of the American Prospect, Ben Adler has this interesting disability rights-oriented post about the whole Ashley business. Surf on over and check it out.

AMA to Meet with Activists Mad About Growth-Stunting Case

See this article by that title. This controversy bubbled up during my little hiatus, so this is the first I've posted on it. The article begins:

The American Medical Association bowed to pressure from disabled activists and agreed to meet Tuesday to hear their concerns about growth-stunting treatment performed on a severely brain-damaged Washington girl.

The now 9-year-old girl identified only as "Ashley" had surgery at Children's Hospital & Regional Medical Center in Seattle to remove her womb and breast buds, and hormones to keep her permanently child-sized -- treatment some activists say amounted to mutilation.

The treatment was first publicized in a medical journal owned by the AMA, and her parents created a Web site about their "pillow angel" last month to defend their decision. Their daughter was diagnosed with severe brain damage shortly after birth. She can't walk, talk, sit or stand and functions like a young infant.

Her parents say the treatment makes Ashley more portable, more comfortable, and will enable her to remain with her family and receive care at home even as she ages.

"We are still asking that the AMA oppose the Ashley treatment" and to endorse proposals to allow disabled people on Medicaid to get-in home support so they can avoid drastic treatment or being institutionalized, said Chicago activist Amber Smock of the group Feminist Response in Disability Activism.