TABLE 1 Working Group Topics Suggested for Research Support

Fairness in the use of genetic information

• insurance

• employment

• the criminal justice system

• the education system

• adoptions

• the military

The impact of knowledge of genetic variation on the individual

• stigmatization

• ostracism

• labeling

• individual psychological responses

Privacy and confidentiality

• ownership and control of genetic information

• consent issues

The impact of the Human Genome Project on genetic counseling

• prenatal testing

• pre-symptomatic testing

• carrier status testing

• testing when there is no therapeutic remedy

• counseling and testing for polygenic disorders

• population screening versus testing

Reproductive decisions influenced by genetic information

• effect of genetic information on options available

• use of genetic information in the decision-making process

Issues raised by the introduction of genetics into mainstream medical practice

• qualifications and continuing education of all appropriate medical and allied health personnel

• standards and quality control

• education of patients

• education of the general public

Uses and misuses of genetics in the past and the relevance to the present

• the eugenics movement in the United States and abroad

• problems arising from screening for sickle-cell trait and other recent examples

• the misuse of behavioral genetics to advance eugenics or prejudicial stereotypes

Commercialization of the products of the Human Genome Project

• intellectual property rights

• property rights

• impact on scientific collaboration and candor

• accessibility of data and materials

Conceptual and philosophical implications of the Human Genome Project

• the concept of human responsibility

• the issue of free will versus determinism

• the concept of genetic disease


SOURCE: Adapted from Understanding Our Genetic Inheritance: The U.S. Human Genome Project: The First Five Years, FY 1991-1995, U.S. Department of Health and Human Senices, Public Health Service, National Institutes of Health, and U.S. Department of Energy, Office of Energy Research, Office of Health and Environmental Research (Bethesda, MD: National Center for Human Genome Research, NIH Publication No. 90-1580, April 1990).

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