This is a familiar story. I just had the experience of seeing a thoughtful interview with a reporter reduced to a very unsatisfying soundbite (see "Prenatal Tests + Abortion = ???" May 13). This post is a way to vent my frustration, but also to ask anyone who cares to respond if you have suggestions for whether or how a different response might have yielded more positive results.
A bit of background: At the suggestions of some of my fellow RH Reality Check writers, Amy Harmon of the New York Times contacted me at the end of last week to ask whether things like prenatal tests might change the debate over abortion. Her subtext question was where would we [pro-choice advocates] draw the line between acceptable and unacceptable reasons for ending a pregnancy?
I was happy to take this call because the Reproductive Health Technologies Project has given a lot of thought to whether and how we think genetic tests offered during or before pregnancy should be made available. We put together a statement on this subject (PDF) after a year of internal discussion and external consultation with bioethicists, genetic counselors, patient groups, and advocates in disability rights, social justice and reproductive health.
In the interview I embraced the impulse to draw the line between what is acceptable and what is not. We all do that for ourselves everyday—it is a basic condition of being human. Sometimes, because this is a less than perfect world, where we draw that line depends on the circumstances we are in. In the case of abortion, these circumstances include the quality of our intimate relationships, the existing demands of a young family or an ailing parent or spouse, the realities of a limited income, or the need to get our feet on the ground before taking on the responsibility of becoming a parent.
Every person's circumstances are different and our society is built on the premise that people should be able to practice their own morality or faith. So in a society as rich and diverse as ours it seems inappropriate, indeed maybe even wrong, to impose my moral sensibilities and values on someone else. These are life changing decisions. How can I tell someone they have to do what I think is best for them? That is the essence of the pro-choice mission, so "no" I said to Ms. Harmon, "I don't think these tests will change the debate over abortion."
That boiled down into a pull quote "an abortion-rights group said it couldn't define the line, ‘firm and clear.'"
Insert Homer Simpson "d'oh!" head slap here. (To be fair, the direct quote makes it clearer that my problem is imposing that definition on someone else.) I should have seen that coming. Our refusal to set limits is part of what makes people believe abortion rights advocates are out of step with the public.
However strong the demand for a simple answer, I cannot step away from the principle that it is individual women, in the context of their lives, their families, and their communities, who must make the decision about which child to have or when. Banning a specific use of a technology does not guarantee the desired outcome of every child loved and cared for regardless of their genetic makeup. That is a much larger task.
While I cannot make the decision for someone else, I can redouble my efforts to ensure that those decisions are made in an environment of opportunity rather than limitation. Ironically, I met someone later that day who works with a disability rights organization. She told me that for the first time ever, the average cost of renting a studio or one bedroom apartment nationwide exceeds the average monthly social security insurance payment received by someone with a disability.
So, if I had it to do all over again, I would have said "These tests probably won't change the abortion debate, but I hope they spark a more meaningful debate about what kinds of supports we are prepared to offer to individuals and families living with disabilities." This incident also led me to reach out to the American Association of People with Disabilities and the Disability Policy Collaboration to learn more about their policy and educational priorities so that I may more knowledgeably advocate for those priorities.