Remarks by Marsha Saxton

Remarks by Marsha Saxton

Disability Community Perspectives

Many of the new genetic and reproductive technologies are intended to eradicate disease and disability. Prenatal testing, pre-implantation diagnosis, and stem cell therapies all promise the amelioration of impairment. They also generate much controversy. Yet conspicuously absent from the debates are the voices of those individuals who would be most directly impacted by the use of reproductive technologies: people with genetic disease and disabilities. Their opinions on new genetics are rarely sought out. The media and the general public often assume that disabled people would embrace these technologies and the quest for genetic cures. However, many experienced disabled advocates are critical of the applications of these new genetics.

Marsha Saxton works at the World Institute on Disability and teaches Disability Studies at the University of California, Berkeley. She served on the Working Group of the Human Genome Project in the 90s. Saxton's work within bioethics, disability rights and reproductive justice has helped raise awareness about the impact on, and concerns of, people with disabilities in regard to the new genetics. The voices of disabled people need to be heard because their views have much to offer to the broader debates. Saxton offered a brief history of the writing and advocacy by disability activists and their allies over the past twenty-five years and identify key issues from the perspectives of people who live with the conditions that science strives to eliminate.