Prenatal screening and its impact on persons with disabilities.

Abstract

A lawyer from the World Institute on Disability uses a disability perspective to explore some policy effects of prenatal screening. This perspective is grounded in life experiences of persons with disabilities who hold academic, scientific, and social positions that allow them the opportunity to share their on the value of living with a disability. Society must first clarify what goals it wants to attain before it considers the effectiveness of prenatal screening. If society wants to save future humans from suffering a terrible quality of life, it must be confident that a link exists between predictable genetic consequences and a negative life experience. If the goal is to deal with economic or social disadvantages related to genetic disabilities, society should at least study whether methods other than prenatal screening can achieve this goal and society should scrutinize these alternatives. Even though the disability rights movement acknowledges economic and social disadvantages, it also knows that many persons with disabilities have satisfying jobs, happy family situations, and various community roles. Thus, the disadvantages can be eliminated without getting rid of persons with disabilities. Advocacy for civil rights protection, legislation to eliminate environmental obstacles, agendas to promote and make available technology, and more effective social support programs are ways the disability rights movement tries to remove social and economic barriers. Prenatal screening seems to not match the goals of the movement. Further, many of its leaders challenge its value and ethical basis. Some people view prenatal screening as a technology that is advancing without a firm foundation in social policy. The constant growth of information about human genetics makes it more complex to address the value and ethical questions. Society must incorporate persons with disabilities into prenatal diagnosis research and examination of policy alternatives. The disability community wants to contribute to the discussion.