3:00 Rayna’s first pregnancy as an “elderly primigravida” draws her into the anthropological study of reproductive testing
6:30 unlike some of the more sclerotic branches of medicine… gc was open to listening… but like always falls within socio-cultural context, and it seemed imperative that GC’s themselves understand their own context
8:30 is routinization a bad word in genetic counseling?
17:05 Practice in prenatal testing varies from country to country, even among Westernized, economically developed nations. Rayna describes her experiences observing prenatal testing in France. America, she says, is truly the Wild West.
23:23 The French are more likely to treat a demand for more testing as a psychological problem. What is the appropriate balance between enough information and too much anxiety?
27:00 The goals of maximizing information and minimizing anxiety are two forces affecting use of prenatal genetic testing but, Rayna points out, an understanding of the value of lives affected by disability should be a part of the conversation as well – one that (she suggests) may not be in the wheelhouse of genetic counselors.
29:20 Someone recently asked me: why would it be a bad thing if Down Syndrome simply didn’t exist? What would be lost and what would be gained? This question flummoxed me, so I pass it along to Rayna…
39:20 Looking ahead, Rayna expresses her concern about “geneticization” – how models of genetic causation wipe away the discussion of social and environmental forces that may have much more to do with disease development and with outcomes.
Rayna Rapp is Professor of anthropology and an affiliate at the center for disability studies at NYU.
Laura welcomes Rayna Rapp, feminist, medical anthropologist and all-around sage, who has worked for decades in the study of the social impact of prenatal genetic testing. Her 1999 book, "Testing Women; Testing the Fetus; the Social Impact of Amniocentesis in America," is a classic that has influenced generations of genetic counselors.