embryo testing: who decides 'defective'?

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Embryo Testing: Who Decides 'Defective?'

Breakthrough Requires Value Judgment About Life

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By AMY JULIA BECKER

The Hartford Courant

December 5, 2010

hc-op-becker-down-syndrome-1205-20101205

Researchers recently announced a

new method for in vitro fertilization. The technical term for the process is chromosome

aneuploidy screening, and it triples the chances — from 30 percent to nearly 90 percent — of implanting a single, viable embryo during in vitro fertilization.

In chromosome aneuploidy screening, multiple embryos are created using conventional methods. What's new is that five days later, cells are extracted from those embryos. According to the United Kingdom's Daily Mail, " The screening checks embryos for chromosome abnormalities. Any which are faulty are discarded, and only those which stand the best chance of developing into a healthy fetus are implanted back into the womb. " Another benefit arises because " couples paying for private treatment would potentially save thousands of pounds. "

The pragmatic gains are considerable. First, couples struggling to conceive can weed out " unhealthy " embryos, particularly those with Down syndrome, the most common chromosomal abnormality. Second, the process eliminates the need to implant multiple embryos, and reduces the risks associated with births of twins or triplets. And third, even though the procedure costs more than conventional in vitro fertilization, the higher likelihood of success reduces the overall cost of multiple rounds

of treatment. Win, win, win.

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Unless you stop to consider the ethical questions.

In vitro fertilization already runs the risk of commodifying human life.

But chromosomal aneuploidy screening is based upon the assumption that human life is a commodity, with defective and healthy models. The abnormal embryos are discarded, like defective products on an assembly line. Human life becomes a product, and individual embryos are judged — based upon their genetic characteristics — as " healthy " and " faulty. "

A world without individuals with genetic differences seems better. Healthier. Easier. It makes financial sense. It makes emotional sense. It makes biological sense. And yet I am troubled at the thought of throwing away even the beginning of human lives, and I am troubled by the value judgment placed upon those lives.

I have a daughter with Down syndrome. She is not a defective model of a human being, but rather, like me, a human being with gifts and with limitations. Many medical professionals and many parents see Down syndrome and other disabilities as tragedies to be avoided. And it may seem that the only reason I would advocate for more children with Down syndrome is because I don't want my own daughter to be a part of a dying

breed.

But my concern, at its root, is not for Penny. It is for the rest of us.

It is for the people like me, who have grown up with expectations that life is controllable, people like me who implicitly assume that we can get what we want when we want it as long as we work hard enough and have

enough money to spend. Mine is the disabled life, the incomplete life, when my assumptions limit me from receiving life in all its diversity.

I don't mean to deny the obstacles Penny faces as an individual with Down syndrome. And yet her extra chromosome is intrinsic to her being. To take away her extra chromosome would be to take her away, to take away the little girl who got off the school bus the other day and asked,

" Mom, you feeling better? " because she knows I had a cold.

It would be to take away the child who holds her younger brother's hand because he is afraid of the sound of the blender in the kitchen, the little girl who loves to read and sing and say big words. It would be to

take away my daughter, who has taught me more about living than any of my academic credentials and professional achievements ever could.

Discarding embryos because of an extra 21st chromosome seems like a grand medical advancement that will help thousands. And yet discarding embryos discards the possibility for knowing humanity in its fullness. News reports herald chromosome aneuploidy screening as an unquestionably

positive step in reproductive medicine. I see it as just one more move toward a culture of homogeneity and scarcity, where people are valued for what they can produce rather than for who they can become.

Amy Becker lives in Madison.http://www.courant.com/news/opinion/hc-op-becker-down-syndrome-1205-20101205,0,459829.story