Ethics of Technology: Prenatal Testing, Abortion & Disability Rights


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. 

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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  • invalid-0

    Amie – Thank you for the information you provided. I have a 2-year old son with Down Syndrome. I have learned a ton over the past couple years.

    We didn’t do genetic testing due to the risks so we were certainly surprised when Carter was born with Down Syndrome. Heck I didn’t even know we could have a child with Down Syndrome. Well, he needed an operation to relieve the knot in his intestines right away. In the midst of this diagnosis a doctor who I am sure thought she was being quite clever decided to download everything she knew about Down Syndrome kids. The problem was that she focused on everything negative that she could think of for us. I should have told her to leave but we were still in shock. I truly hope this new Act helps foster more information but if it is not delivered properly and doesn’t point out how much these children are like other kids, it will do more harm than good.

    I would never change a thing about my son. He has made me a better person and taught me to appreciate things that I never did before.

    I also want to address something that continues to bother me. I keep hearing and reading about how we need more funding for needy people that are facing raising a child (disabled or not). The federal and state assistance we have received is unbelievable. We don’t pay anything for his therapies. I really haven’t spent any significant more on Carter than my other two children. In fact, I can see how my other kids cost more! They want all the toys their friends have you know. My point is that the money is there. I have medical insurance through my employer which any working person should have. Anything not paid by my insurance including co-pays are picked up by the government agencies. What more does anyone need? When Carter turns 3 he can go to a public school and get all his therapy there.

    Along the lines of providing examples of why I think expectant mothers are not getting the information they need in terms of financial assistance, I can point to my sister, Lyndsay. She is pregnant with her third child. The father, if you can call him that, is in an out of jail. However, Lyndsay receives so much assistance from government agencies. She has no cost to have the babies. She receives government housing for less than $200 per month. They simply require a small percentage of her income. She gets food stamps and much more. I think the only thing she has ever struggled to afford were diapers! And the local crisis pregnancy center provided those many times. So, I just don’t get when people are making the financial need excuse. I am not saying Lyndsay is living the high life, but she has what she needs.

    All kids can be challenging. I have friends that thought they were raising little angles only to come to the harsh realization that their kids needed substance abuse counseling and/or are still living at home in their twenties. One will never find the perfect child.

    As for having a disabled child, navigating through some of the government red-tape is certainly a challenge. But again, there are many people that can help. There are non-profit agencies like my local Down Syndrome Association that helps us not to mention the state agencies that basically walk you through the process and forms.

    The right education is the key! I just hope that people will get the full picture. Life isn’t easy, but there is so much help out there already.

    Scott Lucero, Atlanta GA

  • invalid-0

    “I keep hearing and reading about how we need more funding for needy people that are facing raising a child (disabled or not). The federal and state assistance we have received is unbelievable. We don’t pay anything for his therapies.”

    Seeing as, according to the Children’s Defense Fund, Georgia has one of the highest rates of child poverty in the country I’m surprised you haven’t noticed that so many of your fellow citizens are in need.