I've mentioned before that I'm taking part in the Faith Forum on Genetics sponsored by Pacific University, Ecumenical Ministries of Oregon, and the National Institutes for Health. The project is designed to help faith communities grapple with the theological / ethical questions that surround new genetic technologies.
One of the most difficult questions you'll encounter in this field of study is the question of disability. Is it ethical, for example, to terminate a pregnancy because genetic testing shows that once born the fetus might develop alcoholism or some debilitating disease at a later stage of life?
PBS's Religion and Ethics Newsweekly covers a related topic this week on their program. Host Bob Abernethy says:
We have a special report today on a wrenching ethical dilemma that has emerged from new medical technologies. Doctors can now detect early in a pregnancy if a fetus has Down Syndrome. The condition usually results in physical disabilities and some degree of mental retardation. Armed with that information, expectant parents face the decision of whether to terminate the pregnancy.
My wife and I decided not to have our twins genetically tested. That was a personal decision and we were fortunate that they were born without any problems. I'm comfortable leaving decisions such as these up to the potential parent / parents involved.
But I also take seriously this statement from the National Council of Churches USA that was included in their recent report Fearfully and Wonderfully Made: A Policy On Human Biotechnologies:
The promise and danger of biotechnology is perhaps nowhere more obvious than the ways it affects people with disabilities and their families. There is no one "disability" perspective on the use of biotechnology, for people with disabilities and their families are first of all people, with different values, theologies, and understandings about the purpose of life and God's call to care for one another. The use of tools and processes declared to be neutral and value free, and designed to relieve suffering, holds great promise when they can support the lives of people with disabilities or alleviate unnecessary pain or suffering. But biotechnology becomes profoundly disquieting to many with disabilities when disabling conditions or predictions are equated with life long suffering, imperfection, or disease. When those personal and social values are combined with the power of technology to prevent the birth of a child with a disability or defect, the possibility of a new eugenics fueled by social values, market forces, and personal choice, rather than official policy, becomes quite real.
Our reflection causes us to challenge the assumptions that everything needs to be "fixed" or "improved" and that we know how best to do this; and that just because something can be done does not mean it ought to be done. Science cannot save us from finitude.
Click here to read and / or watch the PBS story.
Where would you draw the line?
