Fitting Into Your Genes: Abortion, Disability and the Politics of Genetic Testing
Not so many years ago, genetic testing and selection seemed like a thing of the future. Gattaca-like scenarios seemed far off. Now, however, those scenarios are more imminent and as reproductive rights activists we've got to sort through the science and politics of it all. Since my post about sex-selection in India, I've been thinking quite a bit about the convolutions of this debate and how to configure a political stance on these issues that incorporates all the things I value. There are debates raging in the blogosphere, in the activist communities and in the world at large about genetic testing and reproductive rights. The New York Times is running a series of articles called "The DNA Age: Choosing to Know" (see sidebar for all articles). The questions are moral and political and because these phenomena happen on the site of women's bodies, the answers are crucial to a vision of reproductive justice. I can't say that I have any clear answers to these but I thought I'd take this opportunity to lay out the debate and offer some thoughts on it.
Not so many years ago, genetic testing and selection seemed like a thing of the future. Gattaca-like scenarios seemed far off. Now, however, those scenarios are more imminent and as reproductive rights activists we've got to sort through the science and politics of it all. Since my post about sex-selection in India, I've been thinking quite a bit about the convolutions of this debate and how to configure a political stance on these issues that incorporates all the things I value. There are debates raging in the blogosphere, in the activist communities and in the world at large about genetic testing and reproductive rights. The New York Times is running a series of articles called "The DNA Age: Choosing to Know" (see sidebar for all articles). The questions are moral and political and because these phenomena happen on the site of women's bodies, the answers are crucial to a vision of reproductive justice. I can't say that I have any clear answers to these but I thought I'd take this opportunity to lay out the debate and offer some thoughts on it.
The debate seems to center on a few key issues.
1. Reproductive Rights and Abortion: Until recently, legislative and policy debates over things like cloning and genetic testing and/or selection in the United States took place almost entirely within the framework of abortion politics.
Those who promote the use of these procedures often try and appropriate the language of reproductive rights and freedom of choice. They argue that parents should have the "right" to choose the genetic constitution of their future children—to choose not to have a disabled child, or to pre-select traits using IGM (Inheritable Genetic Modification).
Then there are those who oppose such procedures, who oppose abortion as well, based on the ideology that women should not have unfettered decision-making abilities about their bodies. They often argue that children born with a genetic disability have a "right to life" that must be respected above all else. For an example of this kind of argument, see George Will's recent article in Newsweek, about children with Down Syndrome.
This brings us directly to the next issue.
2. Politics of Disability: The debate over at Pandagon is centered on the issue of abortion for "selfish" reasons (like not wanting a child with a disability). Disability rights advocates continue to be among the most vocal critics of emerging technologies of human genetic modification. Knowing that they have historically been targets of eugenic selection, and that eugenic norms of "perfection" could easily override the values of care and diversity that are crucial to their lives, they often speak out against such technologies.
Despite these views, many disability rights advocates uphold a woman's right to decide when and whether to bear a child, and support a full range of reproductive rights. However they take issue with abortion when it is undertaken to prevent the birth of a child with particular characteristics. This opposition comes from a challenge to the idea of "normalcy" that makes some lives more valuable and worthwhile than others and that the selective elimination of fetuses judged "abnormal" harms disabled people and threatens human diversity.
Bioethicist Adrienne Asch explains, "My moral opposition to prenatal testing and selective abortion flows from the conviction that life with disability is worthwhile and the belief that a just society must appreciate and nurture the lives of all people, whatever the endowments they receive in the natural lottery."
This brings us to my final, culminating point about genetics and reproductive rights.
3. Social Justice—Race, Class and Homophobia:
As the issues of reproductive and disability rights clearly show, these decisions about genetics are not made in a social vacuum. They are made in a world that exerts oppressive force in many ways. Women's rights must be respected. Disability rights must be respected. The power to decide when and how we have children is expanding (for some members of our society) to include what kinds of children we have. This is an unwieldy burden.
We have to acknowledge that, as it stands, such medical procedures are available to the very few who can afford them. We have to know and consider the deep history of eugenics so that we can ensure that such technologies do not support racism and ableism in our society (and sexism in many societies). These are critically intertwined considerations.
For some interesting examples of homophobia manifesting itself in the debate on genetics, take a look at an article by Alber Mohler. Mohler argues that if there were a test to determine and "rectify", in vitro, whether a child would be born gay then that should be allowed and supported by those who believe homosexuality to be a sin. William Saletan and the New York Times have also recently written about science involving the sexual orientation of sheep and the implications of this research for humans.
So we see how our social predjudices can affect the debate about genetics, which is somehow still thought to be an objective domain. After all this, it seems that we need to look at issues of genetics through many lenses. And while I haven't really offered any answers, I think that this is a first step toward determining a politics about genetics that takes all these complications into account.
For more information on these issues, see the following organizations:
- Disabled Women on the Web, http://disabledwomen.net
- World Enable, http://www.worldenable.net
- Center for Genetics and Society, http://www.genetics-and-society.org/index.asp
- Committee on Women, Population and the Environment: Gender, Eugenics & Biotechnology Task Force, http://cwpe.org/taskforces/geb