From Transition Letter Attachment Sent by AAPD and a Coalition of Consumer Controlled Organizations (12/22/08):
Genetic Science and Technology
· Society is rapidly increasing its use of genetic technologies, including prenatal genetic testing and screening, trait selection, stem cell therapy, and personalized medicine. Individuals increasingly face complex decisions about how to use genetic technologies.
· The general public’s understanding of what it means to have a disability or raise a child with a disability is limited. Physicians, genetic counselors, personalized genomics companies, friends, family, and the media may offer limited information which often provides a medical prognosis without the context of life experiences of people with disabilities.
· Income, geography, and language often limit access to genetic technologies, leading to disparities in the use of genetic testing, therapies, and other treatments.
· Genetic technology policy discussions often assume the need to prevent or cure disability without contextualizing the issue in a broader discussion of funding priorities for supports and services.
Long Term Goals:
· Convene a national summit to develop a consensus protocol for assessing the impact of genetic technology policy on people with disabilities, considering the impact - not simply the intent - of policy, practice, and regulation and include leaders of the disability community.
· Assure all administration policies affirm the rights and values of people with disabilities, support the autonomy of women and families, and promote an ongoing dialogue.
Short Term Goals:
· Hire and appoint people with disabilities who have worked with prominent consumer-controlled disability organizations and have expertise in genetic and related ethical issues, to the Office of Science and Technology Policy and the President’s Council on Bioethics.
· Ensure active participation of people with disabilities as leaders in the debates surrounding genetic technologies, challenging assumptions about the need to prevent, cure, or eliminate disability by appointing them to decision-making agency and interagency bodies.
· Seek appropriate funding to implement the Prenatally and Postnatally Diagnosed Conditions Awareness Act, with leadership from national consumer-controlled disability organizations to gather information about living with intellectual, developmental, physical, visual, auditory, sensory, and mental health disabilities, and distribute in accessible formats and multiple languages.
· Implement the Genetic Information Nondiscrimination Act (GINA) with leadership from consumer-controlled disability organizations that have expertise in living with genetic conditions.
· Ensure that all genetic research goes forward with a proper understanding of the ethical issues involved and sufficient support to positively affect the quality of life of people with disabilities.
· Fund research to explore the social and demographic consequences of genetic testing and selective abortion/implantation on disability populations and the general population.