Listen to My Interview on NPR

This morning, I was on my local NPR station (WNPR 90.5 in Hartford) as part of a panel of people discussing prenatal screening. We talked about lots of practical issues (the tests available, the process of making decisions around testing, etc.) as well as the stickier ethical and emotional questions that the increasing availability of prenatal tests raises.

Also on the show were Alicia Craffey (a genetic counselor at the UConn Health Center, who happened to be my counselor during my three pregnancies); Erik Parens, Ph.D. (a bioethicist with the Hastings Center); Brian Skotko, M.D. (medical geneticist at Children’s Hospital, Boston); and Holly Salegna (parent of a child with Down syndrome and affiliated with the Connecticut Down Syndrome Congress).

You can listen to the show, which lasted about an hour, through the WNPR web site.

 

 

About Ellen Painter Dollar

Ellen Painter Dollar is a writer focusing on faith, parenting, family, disability, and ethics. She is the author of No Easy Choice: A Story of Disability, Faith, and Parenthood in an Age of Advanced Reproduction (Westminster John Knox, 2012). Visit her web site at http://ellenpainterdollar.com for more on her writing and speaking, and to sign up for a (very) occasional email newsletter.

  • http://www.savingdowns.com Mike Sullivan

    When a society has a mantra of “informed choice” to choose their type of baby, it has entered the field of eugenics. We are reducing the birth of people with Down syndrome and are moving towards eradication of a group of human beings, all in the name of choice. Who will be next? Will anyone care? After all it’s about my choice.

  • http://www.ellenpainterdollar.com Ellen Painter Dollar

    So you don’t think it’s important for people to be fully informed before they make prenatal choices? Because they WILL make choices. Those choices are legal, but even more important, we’re not going to turn back time to a time when no one knew anything about their child until the moment of his/her birth. One thing that I and others in this field advocate for is that families receive balanced information about the condition their child is prenatally diagnosed with. So for example, Brian Skotko, who was on the NPR show with me yesterday, has advocated for families whose baby is prenatally diagnosed with Down syndrome to be offered much more balanced and comprehensive information, including being connected with families whose children actually have DS. Part of the problem is that parents often know only the worst-case scenarios with whatever disability their child is diagnosed with. Maybe that’s because their providers focus only on worst-case scenarios. That absolutely has to change. People will make choices; I want to make sure that they’re considering the many issues involved, including some vital ethical concerns, as well as getting a full picture of what life with a disability can be like. As you and I both know, it can be full and rich and rewarding. That’s part of informed choice or informed consent.

    Again, it appears that your fundamental problem with my message is that it’s not unequivocally pro-life. And that’s an argument I’m not going to get into. I’ve publicly shared why I am a pro-choice Christian, but here I’m talking about other (related, but still other) concerns.

  • http://www.savingdowns.com Mike Sullivan

    Thanks Ellen. It is eugenics that I oppose, so I don’t support prenatal choice for mothers to decide the type of baby they are going to have, by killing another human being. I believe in prompoting dignity, love and respect for all children, irrespective of their differance. Early screening has only one purpose, to prevent the birth.

    You are right that the issue is here, so it is important to provide better information to limit the damage. Human nature being what it is though, genetic screening will devastate the disability communities, such is the depth of discrimination and people’s misguided attempts to avoid what they see as suffering.

    This is an issue that our group cares deeply about, probably because in NZ the medical profession is targeting our community for birth prevention. We are interesting in saving our people, not endorsing choice to discriminate against it.

    • http://www.ellenpainterdollar.com Ellen Painter Dollar

      I do appreciate why you are passionate about this. And I also think that Down syndrome inhabits a fairly unique place in the disability community. It is in many ways targeted to a greater extent by prenatal screening than other conditions; I noticed in my radio interview yesterday, as I have in other conversations, that DS is always the first thing people talk about when they’re talking about screening. It is also perhaps less well understood than other conditions by many people, particularly when it comes to the vast improvements that have been made in how people with DS are treated, so that IQ levels and such are rising (because kids with DS are no longer written off and institutionalized, but instead given early intervention services and educated in mainstream classrooms). I have a friend and colleague in this field with a daughter with DS who has wondered if it’s even reasonable to classify DS as a disability. In her experience, her daughter, while having some manageable physical and developmental issues, is really not “disabled.” So I think it’s reasonable for you to fight against the idea that children with DS must be spared suffering.

      That’s different for many other conditions in which the suffering is real, tangible, and unavoidable.

      Thanks for coming back to continue this conversation. I do appreciate your passion and willingness to engage me as someone with whom you disagree.

      • http://www.ellenpainterdollar.com Ellen Painter Dollar

        And one other thing, which is that screening is not always geared toward termination. Sometimes screening helps a great deal with preparation. I had amnios with my second and third pregnancies for one reason: Because with my first child, we suspected, but did not know, she had OI (my brittle bone disease) for her first six weeks. Not knowing was awful. You know how people joke when they’re handing a newborn to a nervous first-time parent, “Don’t worry. She won’t break”? Well, I knew that my baby would break. But I wasn’t sure. With the next two babies, I just wanted to know. I needed to be sure. As it happens, in both cases, their amnios came back negative for OI.

  • http://www.savingdowns.com Mike Sullivan

    Life is full of Paradox. Maybe we will exchange notes in a few years time, and wonder what happened to the babies with Down syndrome? And the ethicists will say, well it was about choice. It’s not the world I want for my daughter, but we are a minority, and minorities usually suffer at the hands of others choices.

    Although we differ on choice, I thank you for encouraging good choices. We will continue our advocacy for life and oppose the eugenicists who decided they would target Down syndrome. We owe it to our children and the one in whose image they are created.

    Our time will come, just as it did for the slaves, thanks be to the good work through Wilberforce and his clarity.


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