5
Public Education in Genetics

There is a growing recognition that scientific literacy generally, and genetic literacy in particular, are essential to informed public decision making:

There is the need to have an enlightened citizenry, people who are aware of the nature of science, who use the scientific approach in their decision-making.

(Ebert, 1993)

Scientific literacy encompasses an appreciation of scientific information, but it also requires application of knowledge to personal and societal problems, as well as a recognition of the ethical, economic, political, and legal implications of scientific progress (Hurd, 1985; Bybee, 1986; McInerney, 1987a; Rutherford and Ahlgren, 1988). In addition, scientific literacy must include an understanding of the scientific process. The public is often confused about conflicting scientific information in the popular media. An understanding that information is often incomplete and imperfect in issues of public health would help the public appreciate that conflict and controversy are part of an open process of scientific discovery, investigation, and debate. In addition, mistakes are made in science; scientists need to exercise reasonable caution in reporting results, but the public and the media must also be better able to evaluate scientific claims (Levi-Pearl, 1992).

The Human Genome Project also has recognized an educational imperative in the development of its programs (USDHHS and DOE, 1990, 1991). 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



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement



Below are the first 10 and last 10 pages of uncorrected machine-read text (when available) of this chapter, followed by the top 30 algorithmically extracted key phrases from the chapter as a whole.
Intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text on the opening pages of each chapter. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

Do not use for reproduction, copying, pasting, or reading; exclusively for search engines.

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy 5 Public Education in Genetics There is a growing recognition that scientific literacy generally, and genetic literacy in particular, are essential to informed public decision making: There is the need to have an enlightened citizenry, people who are aware of the nature of science, who use the scientific approach in their decision-making. (Ebert, 1993) Scientific literacy encompasses an appreciation of scientific information, but it also requires application of knowledge to personal and societal problems, as well as a recognition of the ethical, economic, political, and legal implications of scientific progress (Hurd, 1985; Bybee, 1986; McInerney, 1987a; Rutherford and Ahlgren, 1988). In addition, scientific literacy must include an understanding of the scientific process. The public is often confused about conflicting scientific information in the popular media. An understanding that information is often incomplete and imperfect in issues of public health would help the public appreciate that conflict and controversy are part of an open process of scientific discovery, investigation, and debate. In addition, mistakes are made in science; scientists need to exercise reasonable caution in reporting results, but the public and the media must also be better able to evaluate scientific claims (Levi-Pearl, 1992). The Human Genome Project also has recognized an educational imperative in the development of its programs (USDHHS and DOE, 1990, 1991). 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

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy information. This imperative also is intended to develop an understanding of the widely varying personal values and cultural perspectives in our society about complex issues related to genetics. Genetics professionals and qualified educators must assume responsibility for identifying the essential components of genetic literacy. What do we want people to know, value, and do about genetic information? For example, ideally members of the public should know that DNA is the information molecule; they should value the variation and diversity that is expressed from that molecule; and they should be able to participate in public debate about the use of genetic information (J. McInerney, personal communication, 1993). However, the public also needs to understand the interaction and interdependence of genes, the individual, and the environment. Perhaps the most important contribution of new knowledge about genetics is its ability to document a major biological basis for human variation. The old argument about nature versus nurture is outdated; as discussed throughout this report, both nature (genes) and nurture (environment) are important to human health. Broad public understanding of the potential and limits of genetics is essential to avoid genetic reductionism (Holtzman, 1989; Keller, 1992). This is a "tall" order indeed; even many well-educated people lack understanding of these concepts. Nevertheless, the increasing impact of genetic decision making in health and disease makes it important to educate the public in these matters. 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. Understanding the basis of genetics—variability and evolution—reinforces this democratic pluralism with values of personal autonomy, kinship, and respect for variation, thereby helping to decrease artificial social divisions. This conclusion has been echoed twice in the last two decades. In 1975 the National Academy of Sciences (NAS) Committee on Inborn Errors of Metabolism recommended (NAS, 1975): It is essential to begin the study of human biology, including genetics and probability, in primary school, continuing with a more health-related program in secondary school.... Sufficient knowledge of genetics, probability, and medicine leading to appropriate perceptions of susceptibility to and seriousness of genetic disease and of carrier status cannot be acquired as a consequence of incidental, accidental, or haphazard learning.... These health education precepts (including media coverage and personal counseling) have been utilized with some success in other areas of mass public health education such as cardiac risk reduction (Farquhar, 1992). In 1983, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research reaffirmed the importance of public education about genetics (President's Commission, 1983):

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy Efforts to develop genetics curricula [at all levels] and to work with educators to incorporate appropriate materials into the classroom . . . should be furthered. The knowledge imparted is not only important in itself but also promotes values of personal autonomy and informed public participation. BARRIERS TO OVERCOME The world's supply of information increases daily, and nowhere is the flood greater than in science. Much of the news of science has to do with human biology, genetics, and medicine—subjects bearing on individual health and well-being. Because of this avalanche of new information, however, scientific literacy among most members of the public lags far behind the technological trends and innovations. If the public is to have a sufficient knowledge of topics such as human diversity, human development, and genetics, the educational process must begin early in life when children's flexibility and scientific interest are at a maximum. Children must understand the nature and methods of science in general, as well as the broad principles of genetics. In addition, the applications of genetics tend to be driven by technology; children therefore need to understand and appreciate the science behind this technology. Students should understand that technology may have unintended consequences and that it may be fallible (AAAS, 1989a). For example, technology helps scientists to identify certain genes in an individual, but it also may reveal much more information about that individual, including information about families. Similarly, the technology for genetic testing has technical limitations (Chapters 2 and 3). Such knowledge can influence the physical, intellectual, and cultural development of patients, parents, and informed citizens. Educational interventions should encourage open minds and intellectual flexibility, which allow receptivity to new ideas in order to appreciate diversity and variability. This perspective can help people overcome the perception that they have lost control to a medical enterprise that itself has difficulty keeping up with new facts and concepts. WHAT DO PEOPLE KNOW?1 Periodic studies sponsored by the National Science Foundation (NSF) and conducted since 1979 show that general scientific illiteracy is a persistent problem in the United States. A 1990 NSF study suggests that only about 7 percent of Americans can be considered scientifically literate (i.e., having minimal understanding of scientific terms, concepts, methods, and their societal impact). Only 24 percent understand DNA's relationship to inheritance. 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

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy medical discoveries, and 52 percent are able to understand a simple problem dealing with the inheritance of a genetic illness (Miller, 1992). Recent national surveys paint a conflicting picture of the state of public consciousness of genetic disease and the issues surrounding genetic testing. In recent U.S. surveys, more than one-third (37 percent) of respondents report having an immediate family member who has had, is at risk for, or is a carrier of a genetic disease (OTA, 1987). However, it appears that most people harbor a simplistic concept of genetic disease focused on physical deformities and mental retardation, which may not be genetic in origin (NORC, 1990). And although 85 percent of those surveyed claimed to have heard or read little or nothing about genetic screening per se (NORC, 1991), they nevertheless have opinions about genetic testing and appear to sense its potential for misuse: 72 percent believe that the benefits of science generally outweigh any harmful effects (Miller, 1992), and only 48 percent think genetic screening will do more good than harm (NORC, 1991). More than 8 of 10 respondents believed that (1) employers should not have the right to require that prospective employees take genetic screening tests or to use screening results in hiring decisions (ABC, 1990; NORC, 1991); (2) employers should be required to provide a workplace free of carcinogens, rather than exclude workers with an inherited susceptibility to cancer (NORC, 1990); and (3) insurance companies are not justified in refusing to insure a person based on test indications of his or her future susceptibility to serious disease (ABC, 1990). Although initial reporting of an October 1992 survey commissioned by the March of Dimes indicated that a majority of the respondents reported believing that someone else had a right to an individual's genetic information (March of Dimes, 1992a), less than 20 percent of the total respondents thought that an employer had a right to genetic information ( 19 percent of the total) (March of Dimes, 1992b). This survey also confirmed that a majority of the respondents knew little or nothing about genetic testing or gene therapy (68 and 87 percent, respectively). The results of these polls and surveys indicate public confusion and concern about genetics and genetic testing, as well as ambivalence about the complex social and ethical implications of genetic testing discussed throughout this report. WHAT IS GENETICS EDUCATION? There is a wide spectrum of public education interventions in genetics. 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. Finally, the focus of genetics educational interventions narrows to specific disorders that may affect an individual, leading to a range of complex, individualized genetic counseling services (see Chapter 4).

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy Formal Genetics Education There is a growing awareness among educators that a basic understanding of genetics, disease risk, and health choices is an essential element of cultural literacy—as important in the education of a developing child as a basic understanding of hygiene and nutrition. For example, high school biology teachers who participated in training workshops sponsored by Cold Spring Harbor Laboratory rated genetics and ecology as the biology topics ''most important in preparing students for adult life" (Micklos and Kruper, 1991). Systematic genetics education in the context of broader scientific and biological literacy should begin in elementary school with principles of human variability and diversity in the context of the total environment, and then progress through middle school and into high school. This effort should (1) inculcate basic tenets of genetic literacy that are essential for all students as they assume management of personal and family health care as adults; (2) help some students prepare for their future roles as opinion leaders in government, industry, education, medicine, and law; and (3) maintain and broaden the interest of the approximately 15 percent of science-interested students who are focusing on biology or health-related majors (Astin et al., 1991), as well as stimulate this interest in other motivated students. 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 continue throughout adult life in settings outside the formal classroom. The orientation should be interdisciplinary, combining factual material in basic genetics with content from the behavioral and social sciences. Genetics education offers an almost unparalleled opportunity to integrate concepts from several sciences, as well as the personal and social implications of new technologies. Public policy issues in genetics must be broadened to include discussions of personal autonomy; the allocation of public resources; and guarantees of equity for women, minorities, and persons with disabilities. This is consistent with the innovative approaches of "whole learning," "across curricula," and "science-technology-society" that synthesize information from various disciplines and relate learning to the student's personal life and culture (Walker et al., 1980; Bybee, 1986; AAAS, 1989b). Therefore, the basis of scientific and genetic literacy must be a fundamental grasp by elementary school students of the abundant diversity available to them in their own physical and cultural environments, as well as in nature (via nature walks, zoos, and museums of natural history). Comparisons between themselves and other species can stimulate their sense of biological variety and kinship. Students will also see comparisons within their own group, as well as between and within classes at school, or between and within families. The understanding of

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy variety and kinship in the context of environment is well within the grasp of elementary school children; this broad foundation will prepare them for formal study of biology and genetics, including variations that may take the form of disease. This kind of knowledge will help enable them as adults to interpret the scientific information that appears in the media, as well as prepare them for medical problems that may befall them or those they care for. 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). Decisions about genetic testing and its potential personal impact ultimately must be tied to preexisting knowledge and value systems. Without such knowledge, individuals are more likely to make uninformed decisions or to cede all decisions about genetic testing to their doctors. To prepare citizens for informed personal and societal decision making, school children will have to be taught the basics of the relevant science and technology, and the ethical, legal, and social issues stemming from that science and technology will have to be integrated into the science instruction. Several formal programs warrant further study.2 DNA Learning Center One such program is the DNA Learning Center (DNALC) at Cold Spring Harbor Laboratory, which extends that institution's traditional postgraduate research and education mission to the college, precollege, and public levels. The "human genome education center" includes a hands-on student laboratory, student multimedia computing laboratory, and research laboratory. Through a number of grant-supported activities and programs, the DNALC (1) develops new instructional technologies to make genetics accessible to the public, and especially to young people; (2) trains educators for laboratory-based teaching in genetics; (3) provides an interactive learning environment for students, teachers, and nonscientists; (4) extends enrichment activities to underserved populations including minorities, the disabled, the economically disadvantaged, and those living in nonurban areas; (5) provides a forum for public discussion of the personal, social, and ethical implications of genetic technology; and (6) serves as a national clearinghouse for information on genetics, genetic medicine, molecular biology, and biotechnology.3

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy Biological Sciences Curriculum Study Another model program is the Biological Sciences Curriculum Studies (BSCS) program in Colorado. Under a 16-month grant from the U.S. Department of Energy, the BSCS has developed an educational module for the high school biology classroom titled Mapping and Sequencing the Human Genome: Science, Ethics, and Public Policy. This module was distributed free of charge to more than 50,000 high school biology teachers and educators nationwide in mid-October 1992. The module contains two units of background information for the teacher—the first unit deals with the science of the Human Genome Project, and the second discusses ethics and public policy and how to teach these topics to students. BSCS collaborated with the American Medical Association in developing these materials; the American Society of Human Genetics, National Society of Genetic Counselors, Council of Regional Networks for Genetic Services, and other professionals have provided independent reviews. Each activity has been fieldtested in classrooms nationwide. 4 Project Genethics Project Genethics consists of a series of model workshops on human genetics and bioethical decision making conducted by the staff of the Human Genetics and Bioethics Laboratory at Ball State University in Indiana. The workshops are taught by teams of outstanding secondary school biology teachers who have completed an intensive four-week summer component (at Ball State University), an academic year follow-up, and mentor teacher training. The objectives of the two-week workshops are designed to meet human genetics/bioethics educational needs of teachers. Among other things, each participant will be able to apply an understanding of Mendelian inheritance and human pedigree analysis procedures to assessing problems related to genetic screening and genetic counseling. 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. Teachers are selected for a four-phase national program to prepare them to become "resource" teachers. Teachers are recruited from public, parochial, private, and special schools (e.g., schools for the visually or hearing impaired). Resource teachers are chosen for their knowledge, experience, and

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy links with existing teacher organizations. Workshops are conducted to update and expand the use of human genetics materials in school curricula.6 Informal Educational Interventions Public concerns about genetics and genetic testing are an appropriate focus of informal educational interventions, which should facilitate dialogue about the scientific, ethical, legal, and social issues in genetics such as the following: Knowledge of Genetics for Understanding Personal and Family Health. Focusing on the concepts of genetic variability and diversity will avoid simplistic explanations of genetics concepts and risk as either categorically good news—that 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. Since many genetic tests are developed long before effective treatment, the availability of the test should not be considered a technological imperative, as may often be the case in prenatal diagnosis (Lippman, 1992; Press and Browner, 1992; Rothman, 1992). Understanding these complexities will be essential for informed personal and family health decision making in the future. Implicit Goals and Possible Outcomes of Genetic Testing. A variety of implicit goals and outcomes have been identified for genetic testing in different contexts and settings (see Chapter 4). In the case of prenatal diagnosis and population screening, these goals include contributing to family planning, preparing individuals and/or family members to deal psychologically and emotionally with a genetic condition, and providing time to initiate life-style changes or therapies that may mitigate the severity of symptoms. Other, more controversial goals and outcomes of genetic testing, which may be implicit or explicit, include eliminating disease genes from the population by identifying carriers or by encouraging termination of affected pregnancies (Press and Browner, 1992). Concept of Eugenics. The potential for manipulation or direction of human reproduction is also implicit in genetic testing. The public needs to understand that testing for genetic conditions raises value judgments about what is normal versus what is abnormal—and that the social and legal acceptance of such judgments can create a pressure for genetic conformity. The concept of genetic conformity may not only result in disease prevention, but also produce an intolerance of ethnic or racial populations. The eugenics movement in the United States and Europe during the first four decades of the twentieth century attempted to promote "genetic hygiene" to reduce disease; more recently, "ethnic cleansing" in the former Yugoslavia and elsewhere has renewed debate about the possible return of organized policies for social eugenics (see discussion of autonomy in Chapter 8).

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy Relationship Between Genetic Testing and Abortion. Rational discussion of this sensitive issue is critical and must be based on facts and options, and not merely on values or opinions. In recent years, there has been a pervasive trend to separate abortion from the discussion of genetic testing. For example, all direct reference to abortion was deleted just prior to publication of educational materials for participants in the California maternal serum alpha-fetoprotein (MSAFP) screening (Cunningham, 1992). Avoiding discussion of abortion makes it impossible to consider the full implications of prenatal genetic testing and the range of choices available to parents. Discussion of abortion—as with other sensitive matters related to reproduction—often arouses strong reactions in local schools and communities. Nevertheless, awareness of the possibility of abortion among the considerations that follow genetic testing is an essential part of informed consent for any such testing (see Chapters 4 and 8). Sensitivity to Genetic Disadvantage. James Watson (1992), co-discoverer of the structure of DNA and founding director of the National Center for Human Genome Research, offered this analysis of genetic disadvantage: Some people get a bad start in life because they are born into poverty, and some people get a bad start in life because they are born with a bad set of genes. The function of a compassionate society is to deal with both kinds of inequality. Formal biology education typically emphasizes gene states, using terms such as "mutant" and "abnormal" to describe the genes involved in disease conditions. Sensitivity to the challenges and problems of genetic disorders includes care in the use of language (Lippman, 1992) and the avoidance of dehumanizing terms. This is the context in which basic concepts of variety and kinship can help to reduce the stigma associated with genetic disorders. Genetics of Complex Disorders. In addition to understanding variety and kinship, the public will need to develop an understanding of the role of both genetic and environmental factors in complex disorders such as heart disease and some cancers. Although genetic factors are being identified in many common diseases of late onset, they often require environmental interaction to produce disease. 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. One project, coordinated by the WGBH Educational Foundation in Boston, produced eight one-hour programs for release in 1993 through the Public Broadcasting System. These programs are designed to prepare viewers for informed participation in public debate; it will try to make molecular biology intelligible, moving beyond sensational headlines to illustrate the molecular revolution in biology and medicine, and explore the social issues raised by advances in molecular biology. A second project by WNET in New York aired one

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy segment on genetics as part of a 10-part series also on public television in 1993. Public television may only reach a small percentage of the American public, but these programs can also be used in schools and a variety of other settings to educate the public. It will be important to study their use and effectiveness as educational tools in various settings. PUBLIC HEALTH EDUCATION The goal of health education interventions is to prevent disease and promote health. A traditional public health model is to define a problem, identify risk factors, develop and test interventions, implement these interventions, evaluate prevention effectiveness, and develop a national program (Rosenburg, 1992). This model could prove effective in addressing those genetic disorders that are treatable and for which testing is available. However, it could also mistakenly encourage the public to believe that screening or genetics knowledge will make the outcome of every pregnancy a perfectly healthy baby, eliminate all disease, or make everyone "normal" (NAS, 1975). Health educators traditionally equate healthy behaviors with "good" decision making. However, it is impossible to apply this measure of decision making when examining the genetic testing process (Lippman-Hand and Fraser, 1979). The confounding issue in this model, as it applies to genetic disorders, is that many times the disorders cannot yet be prevented because there is no cure; what has been prevented is the births of babies with these diseases. For example, a public health educator may be tempted to use the prevailing public health model in analyzing muscular dystrophy: define the health problem as muscular dystrophy, identify the risk factor in being a member of a family in which it appears, develop and test interventions such as a prenatal DNA diagnostic test, implement such interventions by advising obstetricians of the DNA test as the standard of care, evaluate effectiveness by measuring the number of births with muscular dystrophy, and develop a national program that might mandate prenatal DNA diagnostic testing for muscular dystrophy. Health educators need to recognize the limitations of the traditional model in the context of genetics. 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 the appropriate precepts. The "health belief model" hypothesizes that health-related action depends upon three factors: (1) sufficient motivation (or health concern) to make health issues

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy salient or relevant, (2) perceived threat of a serious health problem, and (3) the belief that following a particular health recommendation would be beneficial in reducing the perceived threat at an acceptable cost (Rosenstock et al., 1988). Some studies have shown that this model has only a very limited value in predicting behavior following genetics-related education (Kaback, 1992). The social cognitive learning theory (Bandura, 1986) says that behavior is determined by expectancies and incentives (Rosenstock et al., 1988). Expectancies include beliefs about how events are connected, opinions about how one's own behavior is likely to influence outcomes, and the ability to influence outcomes. Incentives include the value of a particular object or outcome (which may be health status, physical appearance, or other consequences as interpreted by the individual). BENEFITS AND BURDENS OF GENETICS KNOWLEDGE Understanding of genetics enhances cultural literacy, engenders understanding of the variety and diversity in ourselves and others, and holds the promise of improved treatment and even possible prevention of some diseases (see Chapter 2). Some experts downplay concerns about the emergence of a "new eugenics" (Motulsky and Murray, 1983; Kevles and Hood, 1992; Motulsky, 1992). However, media attention and recent survey data indicate increasing public concern about these burdens, particularly about discrimination (Miller, 1992). Such burdens include the possible misuse of genetic information (e.g., on particular physical traits7 such as stature8 or from behavioral genetics9), and possible social stigma or discrimination in personal and family relationships, as well as in insurance, employment, and education. An informed public is the best societal protection from possible abuses of genetic technology and information in the future. The task, therefore, is to educate the public so that each individual is capable of making an informed decision about seeking or accepting genetic testing and considering personal courses of action. In addition, the public and policy makers must be educated to help them develop appropriate public policy regarding genetic testing and screening. Genetic counseling will ultimately be made more effective by a better-educated public. FINDINGS AND RECOMMENDATIONS With the explosion of genetic information over the coming decade, the committee believes that there is both the need and the opportunity to increase public literacy about genetics and genetic testing. Genetic testing is not an end in itself. 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

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy an understanding of the widely varying personal values and cultural perspectives in our society about complex issues related to genetics. The committee believes that genetic literacy is essential to individual and public empowerment—for understanding not only ourselves, but our relationships to our families, our communities, and the world. In contrast to most health behavior strategies, the committee recommends that the goal of genetics health education not be to elicit any particular behavioral change, but rather to produce informed decision makers by providing genetics knowledge to increase options, help people make informed choices, and promote an appreciation and acceptance of human variation and differences. The committee recommends more analysis of the implications of applying concepts of public health education to genetics, including analysis of what has been learned from the concepts of the health belief model and the social cognitive theory in relation to health-related decision making in genetics. 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. Model programs like those described in this chapter can help to provide the foundation for a genetically informed public, and will be enhanced by the inclusion of ethical, legal, and social issues in genetics. With a solid foundation in school-based education, the public will be better prepared to respond to both scientific and social issues arising from genetics technologies. However, the committee is concerned about the rate of adoption of information imparted by these programs. Further assessment is needed of the impact of these programs and the utilization of the knowledge gained. Evaluation should also include identification of the barriers to integrating genetics—including the social implications—into school curricula, and methods for reducing such barriers. Variation and kinship in the context of the environment should be the fundamental concepts of genetics education for the public. The committee recommends that genetics education include ethical, legal, and social issues stemming from science and technology. To ensure quality, programs will need the continuing advice of genetics experts to keep them current; this will be a considerable challenge given the rapid rate of knowledge development in genetics. There is no prospect of having enough specialized professional genetics personnel in the United States to provide the essential education required to prepare the public for personal and public policy decisions as genetic testing becomes more widespread. Nevertheless, the committee recommends that genetics professionals and qualified educators assume responsibility for identifying the essential components of genetic literacy to serve as the basis for expanded public genetics education. This approach to public education about genetics will not be a small or an easy task.

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy The committee recommends that the Human Genome Project's Ethical, Legal, and Social Implications (ELSI) Program at the National Institutes of Health and the Department of Energy coordinate a public education initiative in genetics and expand its support for such efforts. It will be necessary to bring leaders from education and other professions, other federal agencies, support groups, foundations, and consumers to formulate appropriate goals and strategies. Among the important strategies to be considered are (1) to ensure that appropriate educational messages about genetic tests and their implications reach the public; (2) to incorporate principles, concepts, and skills training that supports informed decision making about genetic testing into all levels of schooling-kindergarten through college; (3) 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); and (5) to enlist the mass media to help decrease consumer confusion and increase the knowledge and skills that will equip consumers to make the most appropriate decisions for themselves. The National Science Foundation should (1) expand its programs that support model educational initiatives in science for precollege and college programs in molecular biology; (2) collaborate with the ELSI program of the Human Genome Project to encourage such programs to focus the attention of students on the health, social, legal, and ethical issues raised by genetic testing and screening as well as on science; and (3) require evaluation of educational interventions. Broad public participation will be required to develop educational approaches that respect the widely varying personal and cultural perspectives on issues of genetics, and are tolerant of individuals with genetic disorders of all kinds. Particular effort will be needed to include the perspectives of women, minorities, and persons with disabilities, who may feel especially affected by developing genetics technologies. There is much to be learned from those who are particularly affected by genetic testing technologies, and from those affected by genetic disorders, including persons with disabilities and their families and support groups. Strategies for enhanced public education could include: meetings of representatives of national groups of clinical geneticists, counselors, educators, laboratories, foundations, public health officials, genetic support groups, and consumers to explore common interests and develop a common educational initiative; support for the review of current genetics educational materials prepared by various groups, to foster balance in the presentation of information (including balanced information on the nature of genetic disorders, as well as the benefits

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy and harms of genetic testing), and to ensure that the information is understandable and appropriate to the intended audience; development and evaluation of existing teacher-tested lessons on genetics for use in a variety of classroom settings at different grade levels; design of model curricula for teaching and evaluating genetics, as well as the ethical and societal implications of genetic testing and screening, from kindergarten through grade 12—including concepts of respect for genetic diversity (differences) and kinship that can be understood by children of all ages, and treatment of sensitive issues related to reproduction; recommendation to state boards of education to mandate inclusion of at least one human genetics course in requirements for teacher preparation; development of a "Consumer's Guide to Genetic Testing" on genetic services, various genetic tests, and the implications of the tests so as to provide balanced, reliable, readily understandable, and available sources of needed information; support for the development of community-based programs, that focus on the particular needs of special populations who may be at high risk for particular genetic disorders as a consequence of race or ethnicity, and involve appropriate community leaders, centers, churches, and synagogues; and support for a working group on the role of the media in increasing consumer knowledge about genetics and its application, and considering approaches to decreasing consumer confusion resulting from media reporting of genetics, particularly the impact of exaggeration or sensationalism on public understanding of genetics, as well as on individuals and families affected by genetic disorders. NOTES 1.   In developing its recommendations for the educational interventions for the future, the committee had the benefit of a background paper on current public knowledge and attitudes about genetics prepared by David A. Micklos. Director, DNA Learning Center at Cold Spring Harbor Laboratory (Micklos, 1992). 2.   There are a few model programs in addition to those mentioned in this chapter; the North Carolina Biotechnology Center in Research Triangle Park is developing instructional materials and conducting workshops for teachers. 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. Paper prepared for the Office of Technology Assessment, unpublished, 1987b). 3.   DNA Learning Center, Cold Spring Harbor Laboratory. D.A. Micklos, Director. Cold Spring Harbor, N.Y. 4.   Biological Sciences Curriculum Study. Joseph D. McInerney, Director. Colorado Springs, Colo. 5.   Project Genethics. Jon R. Hendrix, Founder and Co-director. Ball State University, Muncie, Ind. 6.   University of Kansas Medical Center—Medical Genetics. Debra Collins, Director. Kansas City, Kans.

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy 7.   A complaint was recently filed with the Federal Trade Commission about a radio talk show on Los Angeles' KFI in which a prominent broadcaster was criticized for her decision to give birth to a child with the same genetic disorder that affects the mother (ectrodactylism, the absence of digits in both hands and feet) (reported in the Washington Post, October 20, 1991, p. DI, and on a number of television talk shows and news programs). 8.   Two National Institutes of Health (NIH) clinical trials on the use of growth hormone for short stature have raised broad concerns; both trials are now being reevaluated by outside advisory groups appointed by the NIH. 9.   Controversy over racial and other ethical, legal, and social implications of a planned conference on genetic factors in crime raised questions about the appropriate goals and purposes of genetics, and the use and misuse of knowledge from behavioral genetics. The controversy resulted in the withdrawal of funding for the conference by the director of NIH, and the appointment by NIH of an outside advisory group to suggest program modifications (Washington Post, September 5, 1992, p. A1), even though the conference had been approved by a peer-review group appointed by NIH. REFERENCES ABC News Poll. 1990. Public Opinion Online Database. Roper Center for Public Research, Storrs, Conn., May. American Association for the Advancement of Science (AAAS). 1989a. Pp. 89-90 in Project 2061: Science for All Americans. Washington, D.C. American Association for the Advancement of Science (AAAS). 1989b. Science for All Americans. Washington, D.C. Astin, A., et al. 1991. The American Freshman: National Norms for Fall 1991. Cooperative Institutional Research Program, University of California, Los Angeles. Bandura, A. 1986. Social Foundations of Thought and Action. Englewood Cliffs, N.J.: Prentice Hall. Biological Sciences Curriculum Study (BSCS). 1978. Guidelines for educational priorities and curricular innovations in human and molecular genetics. BSCS Journal 1(1):20-29. Bybee, R. (ed.). 1986. NSTA Yearbook: Science Technology Society. National Science Teachers Association. Washington, D.C. Cunningham, G. 1992 (published in 1994). Statewide governmentally administered prenatal blood screening: A case study in cost-effective prevention. In Fullarton, J. (ed.) Proceedings of the Committee on Assessing Genetic Risks. Washington, D.C.: National Academy Press. Ebert, J. 1993. National Research Council News Report. National Committee on Science Education Standards and Assessment , Washington, D.C. Farquhar, J. 1992. Presentation before the Committee on Prevention of Mental Disorders, Institute of Medicine, Washington, D.C. Holtzman, N. 1989. Pp. 156-157 in Proceed with Caution. Baltimore, Md.: The Johns Hopkins University Press. Hurd, P. 1985. Science education for a new age: The reform movement. National Association of Secondary School Principals Bulletin 69(482):83. Kaback, M. 1992 (published in 1994). Genetic knowledge and attitudes: A multi-ethnic study. In Fullarton, J. (ed.) Proceedings of the Committee on Assessing Genetic Risks. Washington, D.C.: National Academy Press. Keller, E. 1992. Nature, nurture, and the Human Genome Project. In Kevles, D., and Hood, L. (eds.) The Code of Codes. Cambridge, Mass.: Harvard University Press. Kevles, D., and Hood, L. (eds). 1992. The Code of Codes. Cambridge, Mass.: Harvard University Press. Levi-Pearl, S. 1992 (published in 1994). From a consumer's perspective. In Fullarton, J. (ed.) Proceedings of the Committee on Assessing Genetic Risks. Washington, D.C.: National Academy Press. Lippman, A. 1992 (published in 1994). Presentation at the Workshop on Prenatal Diagnosis Proceed

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy ings, IOM Committee on Assessing Genetic Risks, Irvine, Calif. In Fullarton, J. (ed.) Proceedings of the Committee on Assessing Genetic Risks. Washington, D.C.: National Academy Press. Lippman-Hand, A., and Fraser, F. 1979. Genetic counseling: Parents' responses to uncertainty. Birth Defects: Original Article Series 15:325-339. March of Dimes Birth Defects Foundation News Release. 1992a. White Plains, N.Y., September 29. March of Dimes Birth Defects Foundation. 1992b. Genetic Testing and Gene Therapy National Survey Findings. Louis Harris and Associates, White Plains, N.Y. McInerney, J. 1987a. Curriculum development at the Biological Sciences Curriculum Study. Educational Leadership 44(4):24. McInerney, J. 1987b. Testing for human genetic disorders using recombinant DNA technology: The role of the schools in developing public understanding. Unpublished paper prepared for the Office of Technology Assessment. Micklos, D. 1992 (published in 1994). Public education in genetics. In Fullarton, J. (ed.) Proceedings of the Committee on Assessing Genetic Risks. Washington, D.C.: National Academy Press. Micklos, D., and Kruper, J. 1991. Preparing for the gene age: A profile of innovative high school science teachers in 22 states. Unpublished manuscript. Miller, J. 1992. The Public Understanding of Science and Technology in the United States, 1990. Report to the National Science Foundation, Washington, D.C. Motulsky, A. 1992. Book Review of Backdoor to Eugenics by T. Duster. American Journal of Human Genetics. Motulsky, A., and Murray J. 1983. Will prenatal diagnosis with selective abortion affect society's attitude toward the handicapped? Pp. 277-291 in Berg, K., and Tranoy, K. (eds.) Research Ethics. New York: Liss. National Academy of Sciences (NAS). 1975. Genetic Screening: Programs, Principles, and Research. Committee for the Study of Inborn Errors of Metabolism. Washington, D.C.: NAS. National Opinion Research Center (NORC). 1990. General social science survey 9/1990. Public Opinion Online Database. Roper Center for Public Research, Storrs, Conn. National Opinion Research Center (NORC). 1991. General social science survey 9/1991. Public Opinion Online Database. Roper Center for Public Research, Storrs, Conn. Office of Technology Assessment (OTA). 1987. Public Perceptions: New Developments in Biotechnology. Washington, D.C.: U.S. Government Printing Office. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983. Screening and Counseling for Genetic Conditions: The Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs . Washington, D.C. Press, N., and Browner, C. 1992 (published in 1994). Policy issues in maternal serum alpha-fetoprotein. In Fullarton, J. (ed.) Proceedings of the Committee on Assessing Genetic Risks. Washington, D.C.: National Academy Press. Reilly, D. 1989. A knowledge base for education: Cognitive science. Journal of Teacher Education 40(3):9-13. Rosenburg, M. 1992. Presentation before the Committee on Prevention of Mental Disorders, Institute of Medicine, Washington, D.C.: U.S. Government Printing Office. Rosenstock, I., et al. 1988. Social learning theory and the health belief model. Health Education Quarterly 15(2): 175-183. Rothman, B. 1992 (published in 1994). The tentative pregnancy: Then and now. In Fullarton, J. (ed.) Proceedings of the Committee on Assessing Genetic Risks. Washington, D.C.: National Academy Press. Rutherford, J., and Ahlgren, A. 1988. Rethinking the science curriculum. In Brandt, R. (ed.) Content of the Curriculum. Alexandria, Va.: Association for Supervision and Curriculum Development. Saunders, W. 1992. The constructivist perspective: Implications and teaching strategies for science . School Science and Mathematics 92(3):136-14].

OCR for page 185
Assessing Genetic Risks: Implications for Health and Social Policy U.S. Department of Health and Human Services (USDHHS) and U.S. Department of Energy (USDOE). 1990. Understanding Our Genetic Inheritance. The Human Genome Project: The First Five Years FY 1991-1995. NIH Publication No. 90-1580. National Center for Human Genome Research, Bethesda, Md. U.S. Department of Health and Human Services (USDHHS) and U.S. Department of Energy (USDOE). 1991. Request for Applications: Ethical, Legal, and Social Implications of the Human Genome Project. National Institutes of Health, Bethesda, Md.; Request for Proposals, Department of Energy, Oak Ridge, Tenn. Walker, R., et al. 1980. Sequenced instruction in genetics and Piagetian cognitive development. American Biology Teacher 42(2): 104-105. Watson, J. 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. Yager, R. 1991. The constructivist learning model. The Science Teacher 58(6):53-57.