Assessing Genetic Risks Implications for Health and Social Policy (1994) / Chapter Skim
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9 Research and Policy Agenda
9 Research and Policy Agenda
Pages 290-308
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From page 290... ...
, and a broad range of private organizations. POLICY OVERSIGHT FOR GENETIC TESTING AND SCREENING National Policy Oversight The need for continuing policy oversight for genetic testing has occupied the attention of the Committee on Assessing Genetic Risks from its inception.
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From page 291... ...
screening; on cystic fibrosis (CF) testing and screening; on DNA banking, DNA data banking, and related confidentiality issues; and on freedom of choice related to prenatal diagnosis and to the selective abortion of fetuses diagnosed with, or at significant risk of, serious genetic disorders and birth defects.
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From page 292... ...
(The ELSI program has already supported consensus conferences to help to develop policy statements on issues such as CF screening, pS3 screening for cancers, the implications of presymptomatic identification of late-onset genetic disorders in relation to implementation of the Americans with Disabilities Act, and research guidelines for large family studies in genetics.) In contrast, some members felt that overall policy oversight for genetic testing would be best provided in the context of a broader body overseeing biomedical ethics generally.
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From page 293... ...
This policy mechanism should allow more comprehensive consensus and policy development, as well as the monitoring and oversight of professional practices related to genetic testing. There have been discussions of and recommendations for a national commission on genetics to develop essential policy and provide oversight for this rapidly developing field, with its many scientific, ethical, legal, and social implications.
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From page 294... ...
Research initiatives involving genetic testing are being supported and developed not only within the Human Genome Project, but also within the research programs of various NIH components (including the National Institute of General Medical Sciences; National Institute of Child Health and Human Development; National Cancer Institute; National Heart, Lung, and Blood Institute; National Institute of Diabetes and Digestive and Kidney Diseases; National Institute of Neurological Disorders and Stroke, etc.~. In developing and approving research protocols, the committee recommends that the NIH implement the recommendations of this committee within the context of research studies.
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These include prenatal diagnosis, predispositional testing, the age and circumstances for testing of minors, and multiplex genetic testing. Prenatal Diagnosis One area requiring additional standards is prenatal diagnosis, a form of genetic testing that is already widespread.
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It is concerned that- with increasing entrepreneurial pressures in prenatal diagnosis the use of prenatal diagnosis for selection of fetal sex may become more widespread in the future. The committee believes this issue warrants careful scrutiny over the next three to five years as the availability of genetic testing becomes more widespread, and especially as simpler, safer technologies for prenatal diagnosis are developed (see Chapter 2~.
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From page 297... ...
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 81. In general, the committee does not recommend predispositional genetic testing for minors unless delays would result in significant harm to the child.
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From page 298... ...
Research will be required to develop and evaluate innovative methods for the grouping of genetic tests in a way that will make it possible for multiplex testing to embody the committee's fundamental principles of informed consent, as well as its principles for genetic education and counseling (see Chapters 4 and 81. RESEARCH NEEDS Assessment of ELSI Research and Policy Studies One key contribution to our state of knowledge concerning research and policy issues in genetic testing would be a state-of-the-art analysis of what has been learned to date from projects supported under the joint Ethical, Legal, and Social Implications Program of NIH and DOE.
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From page 299... ...
Genetics Knowledge and Attitudes of Health Professionals Since genetic testing is increasingly likely to be delivered in primary care settings in the future, the adequacy of genetics education and counseling in such settings will have to be evaluated. Research on knowledge and practices related to genetics and genetic testing among the professionals who are to provide this education and counseling, is essential to the development of proper reforms in education, training, and professional standards related to genetic testing (see Chapters 4 and 61.
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What can be done to increase the cultural appropriateness of genetic counseling and education? What more can be done to inform people effectively about various genetic disorders, including the development of balanced materials?
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Important among these issues of the language of genetics are the use of terms such as "defect" versus "condition"; more attention to the functional status of persons with genetic disorders; and assessment of how people consider the "eradication" of genetic disorders versus the eradication of communicable diseases (see Chapter 4, Box 4-11. Culturally Appropriate Genetic Testing and Counseling The committee recommends research to determine how best to provide genetic counseling in ways that are sensitive and appropriate to a variety of cultures and languages.
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From page 302... ...
The Human Genome Project's ELSI program should coordinate a public education initiative in genetics and expand its support for such efforts. To accomplish essential changes in policy, it will be necessary to bring together leaders from education and other professions, other federal agencies, support groups, foundations, and consumers to explore common interests and to formulate appropriate goals and strategies in public education related to genetic testing.
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From page 303... ...
Computer Innovation in Genetics Education Innovative and interactive computer-assisted systems should be developed to provide clients and professionals with the latest information on genetic disorders and on genetic diagnosis, testing, and screening, as one way to improve the quality of genetic testing, education, and counseling services in the future (see Chapters 5 and 6~. If designed and used appropriately, computer technologies could assist genetics specialists and primary care practitioners by
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From page 304... ...
The ELSI program should coordinate with professional genetics organizations and NLM to develop such a genetics education and dissemination program for interested health professionals (see Chapter 6~. However, more research is needed to determine which tasks in genetics education and counseling can be appropriately accomplished using such techniques and to evaluate these techniques in various settings and populations.
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From page 305... ...
What is the appropriate relative priority for genetic services compared to alternative investments in prenatal care, childhood immunization, or prevention of child abuse, all of which have better-documented cost-effectiveness than genetic testing and screening now has (e.g., GAO, 19921. CRITICAL DEFICIENCIES IN DATA ON GENETICS SERVICES The committee found that basic data on the number and kinds of genetic testing procedures are not available on most genetic testing and counseling services.
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This group should consist, at a minimum, of the National Center for Health Statistics, the Genetic Services Branch, the Human Genome Project, the Centers for Disease Control and Prevention, and Medicaid data experts, as well as CORN and other interested professional groups, and other relevant data experts. Two critical areas for immediate development of data sets are prenatal diagnosis and predispositional genetic testing.
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From page 307... ...
1992. Designing Genetic Information Policy: The Need for an Independent Policy Review of the Ethical, Legal, and Social Implications of the Human Genome Project, House Report 102-478.
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