able, pilot studies will be required to demonstrate that the proposed interventions are safe and effective before their wide-scale introduction can be recommended.
These tests may have long-term impacts, and extensive pretest counseling is critical to ensure voluntary participation and informed consent. The committee recommends research on education and counseling both before and after predispositional genetic testing to ensure that an individual is fully aware of the potential use and usefulness of test results, as well as possible harms of having the information. Research on issues related to predispositional genetic testing should include the key policy issues identified in Chapters 4, 6, and 8. For example, the potential abuse of such information in employment or insurance practice must be fully understood by the individual undergoing predispositional genetic screening or testing, and the provider should ensure that confidentiality is respected.
Providers who conduct predispositional genetic testing should also be well schooled in the principles of genetics and genetic counseling, including the ethical, legal, and social issues involved in genetic testing. In the future, for example, genetic testing for psychiatric diseases will require all psychiatrists to have more training in genetics and genetic counseling, again including the ethical, legal, and social implications of such testing (see Chapters 4 and 6).
The committee believes that special concerns are posed by the prospect of increased genetic testing of minors. The committee believes that its principles for newborn screening are appropriate policy guidance for genetic testing in minors, particularly the principle of benefit to the minor and avoiding the possibility that genetic information will be generated about a child when there is no likely benefit to the child in the immediate future (see Chapters 1, 2, 4, and 8). In general, the committee does not recommend predispositional genetic testing for minors unless delays would result in significant harm to the child. Research should be undertaken to define factors relating to the appropriate age for testing and screening for genetic disorders in order to maximize the benefits of therapeutic intervention and minimize the potential for harms. The committee was concerned about the use of genetic information in adoption in ways that might represent harmful and unwarranted intrusions on individual privacy, for example, to determine "suitability" as parents or as a potential adopted child. Alternatively, some genetic information might be helpful to parents in the care of an adopted child. Further study is needed to determine the appropriate use of genetic—and other medical—information in adoption cases.
Multiplex testing represents one of the key innovations likely to be introduced in genetic testing; it involves performing multiple genetic tests on a single