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NIH Jul 1, 1999 | R01
Genetic Testing, Disabilities, and the Quality of Life
Institution: University of Maryland College Park
FOA Number: N/A
Abstract
This study will examine the significance accorded to disability in judgements about quality and value of human lives, focusing on two domains in which such judgments are of central importance prenatal testing by prospective parents, and the use of disability-adjusted life years (DALYs) to determine the cost-effectiveness of health care interventions. To address these issues, the investigators will convene an interdisciplinary working group of researchers with backgrounds in philosophy, law, genetics, counseling, public health, economics, and social science. The group will
- analyze the extent to which the justifications for actual and proposed uses of prenatal testing and DALYs rest on controversial assumptions about disability and quality of life, and debate the validity of those assumptions; and
- in response to these concerns, consider proposals to regulate or limit the availability of prenatal testing for the purpose of selective abortion, and the use of DALYs for the allocation of scarce health care resources.FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG001979Start Date:
Jul 1, 1999End Date:
Jun 30, 2001PROJECT TERMS:
behavioral /social science research tag, Clinical Research, Decision Making, disease /disorder classification, Ethics, Genetic Counseling, genetic disorder diagnosis, Genetic Screening, Health behavior, health care cost /financing, health related legal, health services research tag, human subject, induced abortion, Judgment, patient care management, patient care planning, person with disability, Prenatal Diagnosis, Public Health, Quality of life, social service
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