Ethics of Technology: Prenatal Testing, Abortion & Disability Rights

Amie Newman

William Saletan writes on Slate today about pre-birth defects, abortion and the ethics of technology. A new law may bridge all three.

Here’s a bit of across the aisle action during this contentious campaign season. William Saletan writes today on Slate ("Pre-Birth Defects – Pre-natal tests, genetics, and abortion") about the increasing availability of prenatal testing and its impact on women’s reproductive health decisions, particularly abortion.

The gist of Saletan’s article is the concern that as more and more accurate assisted technology in the field of reproductive health is developed, couples are faced with more difficult decision making – decision making that brings more responsibililty. As well, both reproductive health and rights advocates and the anti-choice movement are faced with new information that significantly impacts the discussion on both sides. 

As reproductive health technology becomes more able to predict particular health outcomes in babies, pinpointing conditions in utero like Down Syndrome, spina bifida, and anencephaly, and ultrasounds are able to provide a glimpse into conditions as well, pregnant women are faced with an abundance of information that, if not presented with clarity and an understanding of what it all means, may not be helpful.  

Inherent in these new developments is still the time-told issue of a woman’s personal decision making ability in this society, free from government interference. And reproductive health and rights advocates certainly support a pregnant woman’s right to make the decision to terminate her pregnancy based on her own reasoning – not society’s and not the government’s. 

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However, that argument does little to address the underlying issue – the nexus of both disability rights and reproductive rights in this discussion. There has already been a tremendous step forward in this regard – and one about which very few have taken note. 

Governor Palin has used "special needs children" as a cornerstore of her political campaign, claiming that families with special needs children will have an advocate in the White House should she get elected. But it’s been more than a little difficult to ascertain what exactly she means by this in concrete policy terms. The reality for so many families in this country is that they simply do not have access to the services – health, support and otherwise – that Governor Palin has been lucky enough to have. To advocate rhetorically for a "culture of life" without acknowledging that most American families simply do not have the means to care for a special needs child without government assistance is more than useless – it’s harmful. Pregnant women with or without partners faced with making a decision about whether or not to continue with a pregnancy when the fetus may be afflicted with a condition that will require extensive health care and support services throughout his or her life, must take into consideration their economic and familial reality in this situation. 

Which is why a barely reported on Act that was signed into law on October 8th, 2008 has so much significance in this discussion. The Prenatally and Postnatally Diagnosed Conditions Awareness Act, authored by (of all people) Senator Sam Bronwback and originally co-sponsored by Senator Edward Kennedy (with Senator McCain signed on as well), provides pre and post pregnancy support to pregnant women and new mothers whose fetus or newborn is diagnosed with a disability. 

The Act mandates the creation of a telephone hotline to support pregnant women and mothers, a registry service for couples looking to adopt newborns with Down Syndrome, the expansion and development of local, regional and national support peer networks for families of children with disabilities and education and awareness programs for health care providers who speak to parents about prenatal genetics testing. Of course, we really need affordable care services once the children are born, we need to make it easier for low and middle income families to find affordable and accessible child care options, we need health care expansion programs. But this act is a step in the right direction. 

And, true to the collaborative nature of the act, it addresses the connection between reproductive justice and disability rights:

The disability community has been concerned that pregnant women receive negatively biased information about what it means to have a child with a disability, shaped by negative societal attitudes toward disability. A lack of balanced information may contribute to the high rate of abortion upon a prenatal diagnosis of Down syndrome. 

By providing more comprehensive information and resources, the Prenatally and Postnatally Diagnosed Conditions Awareness Act may effectively expand women’s reproductive options. The information and support provided will allow a pregnant woman and her family to determine an outcome that fits within their personal, cultural, religious, and social context. Specifically, more comprehensive material about disability and a physician or genetic counselor will better prepindependent decision that is right for them.

Reproductive health technology brings up new ethical considerations for advocates from the reproductive health community, disability rights community and even anti-choice community but it’s an area where we may find some common ground. 

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