Tuesday, June 2, 2015

Why Bother Developing Down Syndrome Tests?

Yesterday I wrote about Peter Singer, my least favorite bioethicist.

Today, here's a bioethicist asking a new question - do we actually need more and more sensitive Down syndrome tests? Chris Kaposy writes:
There is an inconsistency between the lived experience of people who have Down syndrome and the corporate arms race to develop new and better means for identifying fetuses with Down syndrome. Few people who live and work with those who have Down syndrome would describe it as a serious disability. The arms race to develop these tests is not being driven by the needs of people with Down syndrome or the needs of their families. Of course, a great deal of scientific ingenuity is needed to create novel tests, like the one Dr. Iles and his colleagues have recently described. For this reason, creating these tests might require a lifetime’s work. But the social utility of these tests is incommensurate with the effort needed to create them. In contrast to the scientist who devotes her life to the treatment of cancer, Dr. Iles’s devotion to create a test that helps parents to avoid the birth of people who tend to enjoy their lives seems somehow less ambitious, or off the mark.
Worth a full read.

1 comment:

Mary said...

Some families are more prepared than others are to help a child with Down syndrome to live lives that they will enjoy. I can recall doing some volunteer work at a residential hospital in Pennsylvania in the 1970s. It was a very sad place. A lady in her 80s told me about her father driving her in the wagon to the hospital, where they took away her doll and never let her have another. She still wept a little over it. I imagine she could have done well in a family environment. But she was one of the more able residents. Others seemed able to express themselves only just jumping up and down and making noise, and needed a lot of help with basic hygiene. I honestly don't know if that was because of very extensive disability, or resulted from care that didn't extend much beyond warehousing. I do know we had an elderly acquaintance with a middle aged daughter who was very sweet, but Mother worried very much about what would happen to her daughter after she died and there was no other caretaker. There was no family to step in, no money to leave as a trust. I image that lady eventually was sent to the kind of residential hospital I saw later. Are people with that kind of disability today able to live better lives because they are more likely to be born into families who have made a decision to include them? Who feel able to meet the emotional and financial challenges? Is society better able to set up what support programs there may be because the population is smaller that it would be by natural occurrence, and so number of people per thousand who need services is smaller? I haven't kept up with testing for Down... is it still invasive and does the test itself pose a risk to mother and fetus as amniocentesis did?