The Convergence of Disability Law and Policy: Core Concepts, Ethical Communities, and the Notion of Dignity

Rud Turnbull: The second was around the area of the human genome project from the National Institutes of Health. Nobody before had done any research about what the disability community itself felt about the human genome research. With some colleagues, I did some work on that area, and they included family members of people who had disabilities.

So we began to ask those people who were going to be directly affected by the understanding about the human genome what they thought about prevention or not prevention. And it was very interesting. It was a very mixed message that we got. Yes, prevent it but don't devalue me simply because I have a disability that might have been prevented. And some people said don't prevent. Don't use the human genome knowledge to prevent the disability because it it then in a sense changes the whole nature of humankind.