Designer Babies and the Pro-Choice Movement

I'm suffering from Acute Blogging Malaise. So, I'll just post the link to this article and hope to say something relevant in comments if discussion on it erupts.

"Designer Babies and the Pro-Choice Movement" by Rebecca Tuhus-Dubrow in the current Dissent. A few excerpts:

In vitro fertilization (IVF) does not merely help the infertile to procreate; increasingly, it allows parents to determine the genetic makeup of their offspring. Initially, preimplantation genetic diagnosis (PGD) targeted severe childhood diseases, such as Tay-Sachs and sickle cell anemia. Now, more parents use it to screen out genes for late-onset, treatable diseases, such as colon cancer; sex selection is also popular. According to a 2006 survey conducted by the Genetics and Public Policy Center at Johns Hopkins University, 42 percent of 137 IVF-PGD clinics allowed parents to select for gender. Scientists predict that parents will be able to choose such characteristics as blue eyes or curly hair. Less certain, but plausible, is that scientists will be able to identify genes for more complex traits, such as intelligence and homosexuality. Genetic engineering, which will enable not merely the selection but the insertion of desired genes, is on the horizon. In the United States, this rapidly advancing technology is unchecked by any regulatory mechanism.

and

Even without the borrowed buzzwords, the pro-choice movement would be uneasily close to the issue. Historically, pro-choice arguments have focused on the right to privacy and freedom from government interference. Legally, those are the terms that define reproductive rights. The landmark Supreme Court cases Connecticut v. Griswold (1965) and Roe v. Wade (1973) recognized the right of individuals to control their reproductive destinies. Legal scholars predict that when the question of selecting the traits of offspring inevitably arrives in court, it will be considered in this framework.

Like it or not, pro-choice groups, then, will be compelled to take a stand. They will have to distinguish their concept of reproductive rights from that advanced by neo-eugenicists and to decide whether and how to endorse regulation of reproductive technologies without jeopardizing already tenuous rights. But along with these challenges come opportunities. By incorporating concerns about the abuse of reproductive technologies into a pro-choice platform, the movement can shift away from an individual-liberties paradigm toward a social justice orientation; move away from a single-issue focus on abortion toward a more comprehensive agenda; and form coalitions with other segments of the left.

and, although race, class and GLBT issues related to choice are prominently covered, the only explicit mention of disability and disability rights activists is bolded below:

This issue creates strange bedmates. The common political assumption is that conservatives would oppose the potentially radical change promised by reprogenetic technologies, while liberals would embrace the scientific progress they represent. And indeed, the religious right, concerned about the embryo and the blasphemy of playing God, condemns them, while some liberals are more inclined to welcome them on the grounds of “progress”—and, perhaps, in opposition to “culture of life” priorities. At the same time, economic libertarians oppose regulation of this three-billion-dollar-a-year industry, and a fringe of neo-eugenicists wants to create a super race. Qualms on the left include the potential exacerbation of inequalities, the eugenic overtones, and the environmental implications of meddling with nature.

Other progressive contingents have their worries. Disability activists are wary of technologies that essentially aim to eliminate their community. Gay and lesbian people have an especially complex relationship to assisted reproductive technology. I spoke to staff at the GLBT (Gay, Lesbian, Bisexual and Trans-gendered) Community Center in New York, who said that to the extent that it helps them have genetically related families, they welcome the technology. But if a “gay gene” is ever identified, their communities, too, could be threatened. Many feminists are troubled by sex selection, but fear that regulating any aspect of reproduction could jeopardize abortion rights.

Go over and read the whole article here.

Race as disability

Back in March the story of the Andrews family of Long Island came to public attention. The NY Daily News announced "What a mess, baby: Parents say fertility clinic botched in-vitro & girl's got the wrong dad":

A Long Island woman and her husband are suing a Park Ave. fertility clinic for allegedly inseminating her with the wrong man's sperm.

After struggling to conceive their second child, Nancy Andrews and her husband, Thomas, turned to New York Medical Services for Reproductive Medicine for in-vitro fertilization treatments, according to a lawsuit.

Andrews soon became pregnant and the couple was overjoyed. They only discovered the clinic's "colossal blunder" after Andrews gave birth to her daughter Jessica, court papers charge.

"While we love Baby Jessica as our own, we are reminded of this terrible mistake each and every time we look at her," the Commack couple said in documents filed in Manhattan Supreme Court. "It is simply impossible to ignore."

Thomas Andrews is white and his wife is Dominican. But Jessica, who was born Oct. 19, 2004, has darker skin than either of them as well as "characteristics more typical of African or African-American descent," the lawsuit states.

The couple tested their daughter's DNA using a home kit and later with two more sophisticated methods. All three of the tests confirmed their suspicions - the tot has a different father.

The story came to public notice in March because a judge ruled the couple can precede with their medical malpractice lawsuit but disallowed the claims of mental suffering -- the parents' suffering and baby Jessica's suffering for being a different race than her parents. There's a lot to unpack here and The Nation's Patricia Williams took a stab at it:

What's distinctive about the Andrews case is that the parents... tried to cite... Jessica's pain and suffering for having to endure life as a black person. The Andrewses expressed concern that Jessica "may be subjected to physical and emotional illness as a result of not being the same race as her parents and siblings." They are "distressed" that she is "not even the same race, nationality, color...as they are." They describe Jessica's conception as a "mishap" so "unimaginable" that they have not told many of their relatives. (Telling the tabloids all about it must have come easier.) "We fear that our daughter will be the object of scorn and ridicule by other children," the couple said, because Jessica has "characteristics more typical of African or African-American descent." So "while we love Baby Jessica as our own, we are reminded of this terrible mistake each and every time we look at her...each and every time we appear in public."

Since the claim of mental distress of their child hinges on appearance and public perceptions of skin color, Williams comments on the family's photo:

The picture underscores the embedded cultural oddities of this case, the invisibly shifting boundaries of how we see race, extend intimacy, name "difference." According to the Post, Mrs. Andrews is "Hispanic" and apparently, by the paper's calculations, one Hispanic woman plus one white man equals "a white pair." The mother is "a light-skinned native of the Dominican Republic," seeming to indicate that while she may not be "white," she's also not "black." Each narrative implies that if the correct sperm had been used, the Andrewses would have been guaranteed a lighter-skinned child. But as most Dominicans trace their heritage to some mixture of African slaves, indigenous islanders and European settlers, and as dark skin color is a dominant trait, it could be that the true sperm donor is as "white" as Mr. Andrews. But that possibility is exiled from the word boxes that contain this child. Not only is Jessica viewed as being of a race apart from either of her parents; she is even designated a different nationality--this latter most startling for its blood-line configuration of citizenship itself.

Paul Butler at BlackProf discusses the race issue as well.

If I understand the legal situation correctly, the parents' claim of mental suffering is essentially a "wrongful conception" or "wrongful birth" claim and their suit on behalf of Baby Jessica's mental suffering is a "wrongful life" claim. New York state, where the case resides, has precedence in these situations, which Manhattan Supreme Court Justice Sheila Abdus-Salaam cited in her ruling. Regarding the "wrongful birth" claim:

By logical extension of the principles enunciated by the courts in New York that the birth of an unwanted but otherwise healthy and normal child does not constitute an injury to the child's parents, and that even parents of a child with a serious disease cannot recover for emotional injury for the birth of that child, plaintiffs in this case cannot recover for mental distress arising from having a child who is not Mr. Andrews' biological offspring.... Plaintiffs cannot recover damages based upon their claim that they were deprived of the opportunity to have a child of their own genetic makeup. The Court of Appeals has rejected as too speculative a claim that is " . . . based essentially on "wrongful nonbirth", the deprivation of an opportunity by a woman to have a child by her husband.

While these types of lawsuits were originally an additional claim for malpractice issues like failed vasectomies or lack of medical information provided by doctors, much of the case law centers around the distinction of whether or not a child with disabilities is involved. And, of course, that determination hinges on the ability to diagnose that there's "something wrong" with a child at the time a suit is filed. In the Andrewses case, if Jessica had not been perceived as looking physically different from her parents, her genetic differences (in this case, the fact that her father was not a biological parent) may have gone forever unnoticed.

And because the wrongful life suit (rejected by the judge) on Jessica's behalf claims she will suffer physical and emotional stress from having darker skin than her family, race is made here to be a kind of disability. Disability, after all, is not only about actual impairments, but also perceived impairments -- the ADA recognizes this fact of the social stigma of disability.

While the specific circumstances (of botched reproductive technology leading to wrongful birth and life claims due to skin color) may be new, positing race or gender or ethnicity as a disability is not historically new. Disability is and has frequently been used as a method of demonizing or oppressing other minority populations. That goes back at least as far as Aristotle claiming that women are mutilated (read impaired) males. The medical definition of "hysteria" linked femaleness with mental instability. Irrespective of diagnosed intellectual impairments, black male schoolchildren in U.S. public schools are much more likely than other kids to be placed in special ed classes or considered behavioral problems. There are innumerable examples of oppressed minority identities having their identifying biological difference labelled as a disabling condition.

But culturally, we find it challenging to look at the dynamic from the other direction. Sandel's book (discussed briefly in an earlier, May 26, 2007, post) on the ethics of striving for genetic perfection asks:

Is it wrong to make a child deaf by design? If so, what makes it wrong -- the deafness or the design? Suppose, for the sake of argument, that deafness is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time, in their choice of mate and, these days, in their use of new reproductive technologies?

What if, with an understanding of how elusive and intersecting categories of ability and identity are, that paragraph were rewritten to more closely discuss the Andrewses court case?

Is it wrong to make a child dark-skinned by design? If so, what makes it wrong -- the dark skin or the design? Suppose, for the sake of argument, that dark skin is not a disability but a distinctive identity. Is there still something wrong with the idea of parents picking and choosing the kind of child they will have? Or do parents do that all the time, in their choice of mate and, these days, in their use of new reproductive technologies?

Intersections between identities are never perfect, and matching women's oppression to racial oppression to disability oppression is never a perfect fit of history and experience, but the Andrewses case does beg the above questions about race. The references to "dark skin" could easily be changed to "light skin" to reflect the family's presumption of genetic whiteness, but the "problem" of skin color difference remains.

I confess that I don't know exactly how this court case illuminates the debates over prenatal screening and genetic engineering to avoid children with disabilities. But they are fundamentally related.


Cross-posted at Echidne of the Snakes

Update: Also posted at Racialicious

Going Native: Native women, their rights and violence

A mini-slumgullion of links today on the topic of Native American women's rights and domestic violence:

TiyospayeNow: Fire Thunder Impeachment and the Rights of Women -- Jacqueline Keeler connects the recent impeachment of Cecelia Fire Thunder as Oglala Sioux tribal president to the rights of native women to reproductive freedom and safety from violence:

In addition to impeaching the president, the Oglala Tribal council went one step further than the state of South Dakota -- not only making abortion illegal under any circumstances, except life endangerment, but they made seeking an abortion, or helping someone seek an abortion punishable by banishment from the reservation. So, if a young women is a victim of incest or rape and seeks help from another woman to find an abortion clinic, she and her friend would be banished. Meanwhile, the tribal council resists efforts to deal as stringently with the issue of rape, incest and violence against women, so the men who perpetuate rape are not similarly punished.

Women's Space: Cecelia Fire Thunder, multiple posts -- Heart, who provided the above link to Keeler's eloquent writing, covers the events that led to Fire Thunder's impeachment. Lots of research and excellent links in her multiple entries.

Indian Country: Halting sexual violence -- A June article shows Fire Thunder's pro-choice efforts extend to addressing tribal problems of sexual violence:

Fire Thunder faces an impeachment hearing on June 29. She plans to fight for her office.

''The abortion issue,'' she said, ''is the key that opens the padlock to sexual deviancy that is occurring on the Pine Ridge reservation.''

Sexual deviancy is what Fire Thunder calls rape and incest: crimes that are rarely adjudicated on the reservation. The epidemic nature of the abuse is noticed in drug and alcohol treatment programs where, Fire Thunder said, 87 percent of women will disclose that they were sexually abused, many as children. The ultimate end of domestic assault is rape, what Fire Thunder calls the ''ultimate subjugation.''

Most women on the Pine Ridge reservation, she said, know someone who has been raped. And the stories pour out as women across the reservation start to talk: stories about children bearing male relatives' babies.

Rape victims in particular, Fire Thunder said, need to have the option to terminate the resulting pregnancy.

NOW: Native American women and violence -- Lisa Bungalia writes about the lack of law enforcement assistance for domestic violence victims in tribal areas:

In addition to domestic abuse, Native American women also experience the highest levels of sexual and domestic abuse of any group. A report from the American Indian Women’s Chemical Health Project found that three-fourths of Native American women have experienced some type of sexual assault in their lives. However, most remain silent due to cultural barriers, a high level of mistrust for white dominated agencies, fear of familial alienation, and a history of inactivity by state and tribal agencies to prosecute crimes committed against them.

Indian Country: Indian women rally against white Christian influence on tribal abortion ban -- At a rally just before the November elections where Fire Thunder failed to win back her presidency:

Fire Thunder and Cook-Lynn said American Indian voters have been influenced by the ideology of the Christian right, which they noted has no place in the political arena.

''This is an attack on women's rights that is ongoing; this is a national issue in Indian country.

''If they can tell you you can't have an abortion, they can tell you you must have one,'' Cook-Lynn said, referring to the practice of a few decades ago of sterilizing American Indian women without their permission.

''This is a result of colonization and Christianity; they don't teach reproductive rights,'' she said.

Domestic violence and tribal protection of indigenous women in the United States -- A lengthy paper written by two women professors at the American Indian Law Certificate program at the University of New Mexico School of Law that includes discussion of the role of Indian feminists in tribal solutions to the problem.

Governmentally coerced sterilization of Native American women -- A history of eugenics and genocide through depriving Indian women of their reproductive rights.

More links and resources for tribal domestic violence.