The next exclusion debate: assessing technology, ethics, and intellectual disability after the Human Genome Project.
Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in detecting certain conditions, others have argued that they perpetuate discrimination by preventing the birth of children with disabilities. This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. Finally, the article explores how future research endeavors, policies, and practices may more effectively integrate and respect the positions of these various stakeholders.
Munger
Kelly M
KM
Department of Disability and Human Development, University of Illinois at Chicago, Chicago, Illinois 60608, USA. kmunge1@uic.edu
Gill
Carol J
CJ
Ormond
Kelly E
KE
Kirschner
Kristi L
KL
D020811:Biomedical Technology / Q000941:ethics* / Q000295:instrumentation*; D004995:Ethics, Professional; D005260:Female; D016045:Human Genome Project / Q000941:ethics; D006801:Humans; D008607:Intellectual Disability / Q000175:diagnosis / Q000453:epidemiology; D011247:Pregnancy; D011296:Prenatal Diagnosis; D011640:Public Policy