Tuesday, April 24, 2018

What Does Responsibility Have To Do With Reproduction?

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.


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.


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.