February 28, 2008
"Good Intentions and Eugenics: Avoiding Genetic Genocide"
Professor Paul Steven Miller spoke on "Good Intentions and Eugenics: Avoiding Genetic Genocide" to a packed room of over 150 people in February 2008. Professor Miller has devoted his professional career to fighting discrimination against those with disabilities.
Professor Miller's impressive resume includes roles as the White House liaison to the disability community, President of Little People of America, and one of the longest-serving commissioners of the U.S. Equal Employment Opportunity Commission. Exploring the relationship between the medical and disability communities, he explained that although everyone wants to do what is in the best interest of disabled individuals, what actually is "best" is often understood quite differently by physicians, health care researchers, and people with disabilities.
Professor Miller observed that there are two frameworks used to understand disability: the medical model and the social/civil rights model. The medical model reflects the dominant societal view that illness and disability need medical solutions so that the ill or disabled person can fit into mainstream society. Alternatively, the social model strives to change society to embrace the disabled person as she or he is.
Professor Miller noted that "the advent of genetic technology has a tendency to pull the focus of disability further into the medical-model realm" and that "the disability community is concerned that genetics as currently defined, practiced, and presented to the public reinforces the stigma of disabled individuals as defective individuals." Commenting on the need for the medical and disability communities to understand each other's histories, he also explained:
"The history and social context of the eugenics movement informs how people with disabilities currently view genetic science and medical science as a whole. There is no question that the genetic revolution holds great promise and that today's doctors and researchers have good intentions and want to improve human health for all. But because of the complex historical and cultural context associated with the science of genetics, the medical and disability communities have a difficult time understanding each other."
The lecture was followed by an in-depth question and answer session and a reception where audience members could meet and talk further with Professor Miller.