Assessing Genetic Risks Implications for Health and Social Policy (1994) / Chapter Skim
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5 Public Education in Genetics
5 Public Education in Genetics
Pages 185-201
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From page 185... ...
The Human Genome Project also has recognized an educational imperative in the development of its programs (USDHHS and DOE, 1990, 19911. This imperative is intended to develop a genetically literate public that understands basic biological research, understands elements of the personal and health implications of genetics, and participates effectively in public policy issues involving genetic 185
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From page 186... ...
Much of the responsibility for genetics education must fall to two components of the public education system: formal education, which takes place in the schools; and informal education, which includes educational interventions outside of school. Public education has long been viewed as a key enabler of democratic pluralism, providing individuals with access to elements of cultural, political, and scientific literacy.
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From page 187... ...
However, Americans maintain a lively interest in medical news, appear to understand the rudiments of human genetics, and have already formed opinions about important issues in genetic testing. Seven out of ten Americans are very interested in issues about new
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From page 188... ...
Beginning with broadly based fundamental scientific literacy and appreciation for human diversity and variability, which are acquired mostly in school, educational interventions then should focus more narrowly on the general public awareness of human genetics, genetic disorders, genetic services (such as newborn screening) , and prevention.
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From page 189... ...
This educational imperative has been unchanged since an educational needs assessment by the Biological Sciences Curriculum Study (1978) and the March of Dimes recommended the following: Education in human genetics should begin in elementary school and con tinue throughout adult life in settings outside the formal classroom.
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From page 190... ...
Genetics Education for the Future It is not likely that there will be enough specialized genetics personnel in the United States to perform the essential health education that will be required as genetic testing or screening becomes more widespread. In addition, data from large-scale testing programs suggest that a clinic or a doctor's office is not the best context for a first exposure to genetic testing information, and that public education campaigns and counseling, generally, have a greater impact on individuals with some previous exposure to genetic concepts (Reilly, 1989; Yager, 1991; Saunders, 1992~.
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From page 191... ...
These skills are then used to analyze the social, ethical, legal, psychological, or philosophical problems that can arise as a result of practices such as genetic screening programs, genetics education, amniocentesis, chorionic villus sampling, artificial insemination by donor (AID) , and DNA-based paternity identification.5 University of Kansas Medical Center Another Human Genome Project-funded program at the University of Kansas supports a series of workshops for middle and secondary science teachers to address the lack of public information on the ethical, legal, and social issues of the Human Genome Project.
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From page 192... ...
Focusing on the concepts of genetic variability and diversity will avoid simplistic explanations of genetics concepts and risk as either categorically good newsthat an individual has essentially zero risk for a particular disease-or categorically bad news that he or she is virtually certain to develop it. Many genetic disorders are of variable and often unpredictable severity, and much genetic risk assessment is of an inherently probabilistic nature.
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From page 193... ...
This additional public perspective on genetics is essential to help dispel concepts of determinism that overemphasize the role of genetics in health behavior. The Human Genome Project's Ethical, Legal, and Social Implications Program has funded the development of two television series intended to contribute to this public dialogue.
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From page 194... ...
The 1975 NAS Committee on Inborn Errors of Metabolism recommended the utilization of theories and precepts developed by the health education community: Screening authorities could improve the effectiveness of public education by studying and employing methods devised and tested by professional students of health behavior and health education. The use of the mass communication media and other techniques to change attitudes and behavior has not been particularly successful, partly because of failure to follow .
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From page 195... ...
This educational imperative is intended to develop a genetically literate public that understands basic biological research, understands elements of the personal and health implications of genetics, and participates effectively in public policy issues involving genetic information. This imperative is also intended to develop
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From page 196... ...
The committee therefore recommends that specific funding be devoted to ensuring that all school children receive sufficient education in genetics to enable them to make informed decisions as adults. The committee recommends that systematic genetics education begin in elementary school and be continued throughout formal education.
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From page 197... ...
to enhance consumers' knowledge and ability to make informed decisions in either seeking or accepting genetic tests; (4) to establish systems for designing, implementing, and maintaining community-based interventions for the improvement of genetics education among population groups at higher risk of particular genetic disorders (e.g., increased risk related to race or ethnicity)
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From page 198... ...
The demand for continuing education may increase as teachers are required to prove subject competence and remain conversant with developments in their respective fields (see McInerney, 1987a) ; testing for human genetic disorders using recombinant DNA technology: The role of the schools in developing public understanding.
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From page 199... ...
Englewood Cliffs, N.J.: Prentice Hall. Biological Sciences Curriculum Study (BSCS)
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From page 200... ...
1987b. Testing for human genetic disorders using recombinant DNA technology: The role of the schools in developing public understanding.
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From page 201... ...
1992. Seminar presented at the Department of Energy-sponsored workshop on Human Genetics and Genome Analysis for Public Policy Makers and Opinion Leaders, Cold Spring Harbor Laboratory, February 26.
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