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Assessing Genetic Risks: Implications for Health and Social Policy
ble population. If no effective treatment is available, testing may not be appropriate since more harm than good could result from improper use of test results. On the other hand, future research might result in psychological or drug treatments that could prevent the onset of these diseases. Carefully designed pilot studies should be conducted to determine the effectiveness of such interventions and to measure the desirability and psychosocial impact of such testing. Interpretation and communication of predictive test results in psychiatry will be particularly difficult. To prepare for the issues associated with genetic testing for psychiatric diseases in the future, psychiatrists and other mental health professionals will need more training in genetics and genetic counseling; such training should include the ethical, legal, and social issues in genetic testing.
Because of their wide applicability, it is likely there will be strong commercial interests in the introduction of genetic tests for common, high-profile complex disorders. Strict guidelines for efficacy therefore will be necessary to prevent premature introduction of this technology.
Testing of Children or Minors
Children should generally be tested only for genetic disorders for which there exists an effective curative or preventive treatment that must be instituted early in life to achieve maximum benefit. Childhood testing is not appropriate for carrier status, untreatable childhood diseases, and late-onset diseases that cannot be prevented or forestalled by early treatment. In general, the committee believes that testing of minors should be discouraged unless delaying such testing would reduce benefits of available treatment or monitoring. It is essential that the individual seeking testing understand the potential abuse of such information in society, including in employment or insurance practice, and that the provider should ensure that confidentiality is respected (see Chapter 8 for discussion of disclosure to relatives).
Because only certain types of genetic testing are appropriate for children, multiplex testing that includes tests specifically directed to obtaining information about carrier status, untreatable childhood diseases, or late-onset diseases should not be included in the multiplex tests offered to children. Research should be undertaken to determine the appropriate age for testing and screening for genetic disorders, both to maximize the benefits of therapeutic intervention and to avoid the possibility of generating genetic information about a child when there is no likely benefit and there is possibility of harm to the child.
LABORATORY ISSUES IN GENETIC TESTING
The committee's review of laboratory issues in genetic testing included a workshop with the nation's experts in laboratory quality assurance in genetic testing and meetings with federal officials responsible for implementing federal reg-