nursingclio | Genetic counseling, as the previous two posts in this series
suggested, has a lot to offer for navigating the tricky decisions things
like prenatal testing and preimplantation genetic diagnosis raise.
Well, in this post I’d like to make things a little more complicated. Enter the sheer messiness of history.
I still believe genetic counseling is the best approach we have right
now for helping prospective parents with hard choices, but it has a
complicated — and not so distant — past that continues to shape
counselors’ ways of interacting with clients and their decisions.
A LITTLE REVIEW
In the first post
I shared a little bit of the history of genetic counseling in the
United States and gave some examples of how, today, it can help
prospective parents understand why they’re being tested and what those
tests might mean. The second post
discussed the history of blame and disability more broadly and
introduced the fact that ideas about what disability means have changed
over time — often significantly.
I’ve argued that genetic counseling has the potential to address
feelings of blame, guilt, and confusion in the face of genetic testing
results. Further, it can help answer questions like: What will life
actually be like for parents and their children? What do genetic tests
say and what don’t they say? What are the options after having a test?
My optimism about genetic counseling, evident in these two posts, is
tempered by the fact that it has a complex and challenging past with
origins in eugenics ideology that have influenced the way counseling is
provided today. In a sense what I’m suggesting is that genetic
counseling still has a lot of issues that need to be talked about and
worked on, but that it’s way better than nothing.
Lets take a look at what I mean about how eugenic ideas shaped genetic counseling.
EUGENIC BEGINNINGS
Most of the first genetic counselors in the 1940s, 1950s, and 1960s
were human geneticists, but the origins of human genetics lay in
eugenics. Early genetic counselors identified self-proclaimed
eugenicists like Charles Davenport, founder of the Eugenics Record
Office at Cold Spring Harbor — one of the nation’s leading eugenics
institutions between 1910 and the 1930s — as some of the first human
geneticists in the United States. And four of the first five presidents
of the American Society of Human Genetics, founded in 1948, were also
board members of the American Eugenics Society.[1]
Human geneticists tried to distance themselves from aspects of the
traditional eugenics movement, particularly its racial prejudices and
some of its scientific methods, but were still concerned about the
eugenic effects of their work. They worried about what effect their
counseling might have on the population as a whole.
