Autism Vox

Survey on Perspectives of People with Disabilities or Chronic Health Conditions on Genetics

by Kristina Chew, PhD on January 19th, 2007

Genetic testing is a topic that can arouse impassioned, and sometimes angry, discussion in autism circles: If prenatal screening reveals that a child has a disability, what choices might parents make?

To better understand “the beliefs that people with disabilities and chronic health conditions have about genetic testing, genetic therapy, genetic research and policy preferences,” the Beach Center on Disability is pretesting an online survey on Perspectives of people with disabilities or chronic health conditions on genetics and is seeking participation from persons with disabilities or chronic health conditions and also from their families. The survey is being developed to collect the opinions of persons with disabilities (or chronic health conditions) and their families on human genetics issues; a pre-test can be taken through their website through January 25th. Persons with disabilities or chronic health conditions and parents of those with disabilities or chronic health conditions are invited to complete the survey.

• Go here for more information about the survey.
• Go here to take the survey Disability Community Perspectives on Genetics if you are a person with a disability.
• Go here to take the survey Disability Community Perspectives on Genetics if you are the parent of a child with a disability.

The Beach Center on Disability is a rehabilitation research and training center that seeks to make a “significant and sustainable difference in the quality of life of families and individuals affected by disability and of those who are closely involved with them” through research, teaching and technical assistance. It is located at the University of Kansas. As the Beach Center researchers note,

Genetic research holds enormous potential for affecting the lives of persons with disabilities, their families, and the society in which they live, work, and learn. We believe that it is crucial for the voices of persons with disabilities and their families to be heard on these issues.

Crucial, for sure, and simply necessary too.

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POSTED IN: Disability Rights, Family, Genetics, Health