The long-term goal of Genetic Education for Native Americans (GENA), a project funded by the National Human Genome Research Institute (NHGRI), is to provide a balance of scientific and cultural information about genetics and genetic research to Native Americans and thereby to improve informed decision making. The project provides culturally sensitive education about genetic research to Native American medical students and college and university students. Curriculum development included focus groups, extensive review of available curricula, and collection of information about career opportunities in genetics. Special attention was focused on genetic research to identify key concepts, instructional methods, and issues that are potentially troublesome or sensitive for Native Americans. Content on genetic research and careers in genetics was adapted from a wide variety of sources for use in the curriculum. The resulting GENA curriculum is based on 24 objectives arranged into modules customized for selected science-related conference participants. The curriculum was pretested with Native American students, medical and general university, health care professionals, and basic scientists. Implementation of the curriculum is ongoing. This article describes the development and pretesting of the genetics curriculum for the project with the expectation that the curriculum will be useful for genetics educators working in diverse settings.
RECENT innovations in genetics have increased the intensity of debate about genetics and genetic research among Native American populations. Studies of genetics among Native Americans have been ongoing for many years, and although these studies have contributed to understanding of the role of genetics in diabetes (Kataokaet al. 1996), colon cancer (Lynch et al. 1985, 1991, 1994), and cervical cancer (Beckeret al. 1993), they have also contributed to long-standing concerns within and among tribes. The concerns include, but are not limited to, cultural respect for Native American communities, insufficient informed consent procedures, and lack of participation by Native Americans in scientific, leadership, or career roles in genetic research. The lack of Native Americans in scientific leadership is a singularly important issue in that it raises concern in Native American communities that their cultural values will not be respected or even considered in genetic research initiatives. In fact, nationwide there are fewer than five Native Americans working in genetic-related occupations and, perhaps more importantly, there are no known Native American genetic counselors in the United States.
Funded by the ethical, legal, and social implications (ELSI) component of the National Human Genome Research Institute, Genetic Education for Native Americans (GENA) is a 3-year project (10/1/98–9/30/01), with the long-term goal of providing a balance of scientific and cultural information to increase understanding of genetic research within and among tribes and awareness of careers in genetics. Subsequently it is intended that GENA will improve informed decision making about genetic research among Native Americans. The project goals will: (1) provide culturally competent education about genetic research to Native American college and university students and (2) increase the number of mentoring opportunities available to Native American students in genetic education and research fields. In this article we describe the development of a specialized genetics curriculum that is designed to accomplish the first goal of the study. GENA project activities to develop and evaluate mentoring opportunities will be described in a separate publication.
MATERIALS AND METHODS
Primary guidance for the development of the GENA curriculum was derived from the needs of the learners and the environment in which education was to take place. The “learners” in the study were Native American college and university students. The population of Native American college and university students was heterogeneous and included students whose homes are on rural reservations and others from urban and rural nonreservation environments. Issues related to learner needs and the environment where education could take place were explored with focus groups. The focus group technique (Krueger and Casey 2000) was used to provide the investigators with insight about how GENA would be received by Native American students. The focus groups also explored employing different instructional methods to ensure that Native American students could fully participate in the training. A series of four focus groups with Native American students from different tribes was conducted to identify issues related to providing education about genetics to Native American students. The focus groups generated recommendations to guide curriculum development. The recommendations represented different tribal perspectives on genetic research and were presented in a context that included examples of culturally based concerns about violations of trust that have occurred with genetic research conducted within Native communities, insufficient levels of partnership between researchers and tribal organizations, numerous examples of inadequate informed consent, and examples of situations where Native Americans had been coerced into providing physical specimens for research without appropriate informed consent.
One of the issues articulated most clearly by the focus groups was identification of numerous barriers to implementation of a science or genetics curriculum for Native Americans in colleges and universities. There was concern that Native American students would not be able to gain access to the genetic education curriculum. For example, many K–12 grade schools that serve Native American students have limited-to-nonexistent science education and thus many Native Americans have insufficient background for selected science courses when they enter college. The focus groups recommended that professional meetings and conferences with substantial participation by Native American students would be a venue for providing the education. Professional meetings and conferences would also provide additional advantages with their tradition of providing opportunities for learning in workshops. Professional science-based organizations were identified that have many Native American members, such as, the Association of American Indian Physicians (AAIP) and the Society for the Advancement of Chicanos and Native Americans in Science (SACNAS). These organizations are well established and have annual meetings that are clearly scientific in nature, include consideration of cultural issues as a key component of their activities, and have a tradition of offering training workshops during their annual and regional meetings.
In addition to the focus groups, existing genetics curricula were reviewed by the investigators to provide background information for the development of the curriculum for Native American students (Burhansstipanovet al. 1985; Johnsonet al. 1993; Cutteret al. 1998). Reviews of curricula covering genetics and genetics in research were conducted to identify key concepts that are common across existing genetics curricula and instructional methods and to identify concepts and discussion topics that would be likely to raise issues that are potentially troublesome or sensitive for Native Americans. As a primary example, collection of family history and construction of pedigrees is a common activity in genetics curricula. Although widely used as an instructional method, this activity raises several issues that are sensitive for Native American students. Pedigree construction exercises are based on information about family history, structure, causes of death, age at death, etc. In many Native American tribes, there are strong cultural traditions that bar direct disclosure of any information about deceased relatives. In one Southwest tribe, for example, nearly all discussion about deceased relatives is forbidden. Thus, asking Native American students to construct a pedigree using information collected in their home communities creates conflict with fundamental cultural values. Other similar examples exist and underscore the need for periodic review of traditional approaches to genetic analysis. This is especially the case within the context of culturally distinct yields of pedigrees and public disclosure of personal information.
Sources for the curricula to be reviewed included genetics and education literature, textbooks, personal contacts (F. Dukepoo, unpublished observations), and the World Wide Web. Curricula for classic Mendelian genetics, as well as a comprehensive history of how genetics has progressed in recent years, such as the The Puzzle of Inheritance: Genetics and the Methods of Science (Cutteret al. 1998), were well established, and websites were found to be good sources of information on curricula and good sources for information on genetics. For example, the University of Kansas Medical Center has a website (http://www.kumc.edu/gec/lessons.html) that highlights outstanding lessons (Collins 1995). Another example can be found at the Human Genome Management Information System's (HGMIS) genetic website (http://www.ornl.gov/hgmis/genetics.html). The HGMIS website also provides a short list of other websites linking to general information on genetics.
Curricula were reviewed to compare their scope with the objectives of GENA and to determine the extent to which the curricula had been implemented and evaluated with Native American students. In addition, curricula were evaluated in terms of the level of preparation required for participants, background reading needed, equipment requirements, and adaptability to a conference workshop format. Of paramount importance to the review process was determining the extent to which the curriculum presentation of concepts and examples would be likely to appeal to Native American students and would be feasible to implement using a workshop format at national scientific conferences.
Of the curricula reviewed, the one most directly relevant to GENA was the Native American Genetics Curriculum [Health Resources and Service Agency, Project MCJ-191002-11] (Johnsonet al. 1993). This curriculum was designed for Native American high school students, primarily from Northern Plains tribes, and is organized into seven lessons: (1) Genetics: The Environment, Lifestyle Choices, and Health; (2) Genetics and Chronic Disease: Is There a Connection? (focuses on diabetes, alcoholism, and heart disease); (3) What Are Genes?; (4) What Are Chromosomes?; (5) What Causes Birth Defects?; (6) The Kinship System and Marriage; and (7) Life Choices and the Future. The Native American Genetics Curriculum has been implemented in Native American schools, evaluated, and modified. Although it is well developed and comprehensive, this curriculum was limited in application for the Native American project. If taught in its entirety, the curriculum would require weeks of daily, 1-hr class sessions, which is beyond the scope of many target audiences and workshop venues. Another factor limiting usefulness of the curriculum was that critical topics such as ethical, social, and legal issues related to genetic research are not included. Finally, several parts of the curriculum required access to resources that were unlikely to be available for use in workshops, required background reading and other types of preparation by students, highlighted concepts such as the history of genetic research, which are appropriate for semester-long courses but not for workshops, and lacked relevance to Native American ethical, legal, and social issues.
Two of the project investigators (L. Burhansstipanov and F. Dukepoo) have previously used portions of well-established curricula, including The Puzzles of Inheritance: Genetics and the Methods of Science (Cutteret al. 1998) and the culturally relevant curriculum “Native American Genetic Curriculum” (Johnsonet al. 1993), with success in science and health education classroom settings. After extensive review, both investigators concluded that each of these curricula could be modified for use by GENA. Adaptation of the curricula was more difficult than anticipated, however. Although very effective in traditional classroom settings, these curricula were based on repeated interactions with the same group of learners and/or required access to special resources. Reviewing such effective curricula assisted the investigators in developing criteria for including information in the GENA Workshop Curriculum. For example, no special resources, such as laboratory equipment, could be required if the GENA curriculum was to be successfully implemented in workshops held in conjunction with professional conferences.
Information on genetic careers for the GENA curriculum was collected from an extensive literature review. This literature not only demonstrated a broad range of career opportunities, but indicated that professions such as nursing, social work, and school health programs are likely to increase their training in genetic science and ethics related to genetics as the field expands and issues related to genetic screening and treatment become more complex (Mcelhinney and Lajkowicz 1994).
Content on genetic research for the curriculum was obtained from a variety of sources, including the American Cancer Society (http://www.cancer.org), and position papers on ethical issues related to genetic research were all reviewed in developing the GENA curriculum. Specifically, information from the following sources was included in the review: (1) National Institutes of Health–Department of Energy Working Group on Ethical, Legal, and Social Implications of Human Genome Research (NIH-DOE 1999); (2) The National Human Genome Research Institute Task Force on Genetic Testing (NIH 1995); (3) American Society of Clinical Oncology (American Society of Clinical Oncology 1996); (4) The National Coalition for Health Professional Education in Genetics (Kenner 1998); (5) The National Action Plan for Breast Cancer (Browne and Romilly-Harper 2000); (6) The Department of Health and Human Services Secretary's Advisory Committee on Genetic Testing (DHHS 1999); and (7) the NIH-National Institute of General Medical Sciences committee on diversity report on pharmacogenetics (NIH-DOE 1999). Although the volume of information on genetic testing was extensive, little coverage of cultural issues was found. Each of the curricula reviewed was found to include sections or components that were relevant to GENA. However, all of the curricula were designed to be implemented in classroom settings and relied on repeated interactions with a group of learners (i.e., homework assignments that prepared students for the next lesson) or required access to laboratory equipment and time. Since the GENA curriculum was to be provided in workshops at professional meetings, only limited segments of existing curricula were adaptable for GENA, and the development of additional curricula emphasizing cultural components was necessary.
Criteria for inclusion of information from existing curricula into the GENA workshop curriculum included the following:
Information must be relevant to Native American culture;
curricula must include active learner-participant interaction;
presentation must not require equipment or resources that are not available for workshops (e.g., microscope, laboratory specimens);
participation must require no learner reading or preparation prior to the workshop;
curricula must address scientific, ethical, legal, social, or cultural issues relevant to Native American learners;
information must appeal to intertribal participants (i.e., perceived to be relevant to multiple tribes);
methods must stimulate participant interest to encourage subsequent learning in the fields of science and genetics; and
curricula must be based on accurate scientific and cultural information.
The GENA workshop curriculum is based on 24 objectives (see Table 1). The curriculum can be presented as a comprehensive 16-hr course or as a workshop comprising subsets of objectives selected to fit the needs and interests of specific groups of learners. Presentations of subsets of the 24 objectives generally include introductory information and 3 or 4 of the objectives. The time required for these efforts ranges from 3 to 5 hr.
The first five objectives of the GENA curriculum are an introduction to genetics in a Native American cultural context. Objective 6 (heredity used in every day life) was expanded (cultural issues related to patenting) in response to participant requests for additional information about cultural concerns related to the patenting process. In objectives 7 and 8, students are provided with basic information on genetics and relevance to Native American cultures is demonstrated. Objectives 9 through 13 focus on genetic testing, and students are provided with factual information and guided through discussion of how Native Americans can make informed decisions about participating in testing. Objectives 14 through 20 present information on genetic research and its complex interaction with Native American culture. Objective 16 focuses on pharmacogenetics and highlights pragmatic concerns about this emerging field. In objectives 21 through 23, genetic counseling is described and important issues for Native Americans, for example, pedigree construction, are discussed. Finally, career options in genetics are presented in objective 24. Objective 24 is implemented in a different fashion from the preceding modules; it uses videotape interviews with Native American scientists and student interaction that includes feedback for Native American students who are interested in learning more, but were unable to attend the conference/meeting where GENA was implemented (i.e., allows inclusiveness for those students unable to participate in selected science conferences where GENA was offered).
Pretesting is a critical aspect of curriculum development. The GENA curriculum was pretested with Native American students, health care professionals, and scientists during one national scientific meeting and two smaller, regional meetings. The pretest workshops were carefully evaluated using both quantitative and qualitative measures. Quantitative evaluation was carried out by assessing knowledge levels of participants before and after the workshop. Qualitative evaluation information was collected using participant observation and exit interviews. Participants in the pretest represented a variety of tribes, including Navajo, Arapaho, Oneida, Ojibway, Kickapoo, Cherokee, and Lakota. All were affiliated with universities, and areas of study included medicine, engineering, biotechnology, education, and psychology. Two of the participants were physicians, and others were students in the disciplines listed above.
Quantitative evaluation included pre- and post-test knowledge assessment. Data were obtained from 56 participants. The pretests and post-tests were identical and consisted of four items directly related to the objectives included in the customized workshop. For example, one item that was used was “What is a potential cultural issue for native communities derived from cell line research?” Each item was scored on a scale from 0 to 2, with 0 indicating no response, 1 indicating an incorrect answer, and 2 indicating a correct answer. Two faculty members scored the responses independently and conferred to confirm any disagreements. Analysis of the responses from the 56 participants showed that there was a significant change in the proportion of correct responses from the pretest to the post-test (chi square = 88.9, d.f. = 2, P = 0.0001). Specifically, the proportion of questions not answered decreased from 12% on the pretest to 1.1% on the post-test. The proportion of incorrect responses decreased from 52.6 to 17.6%, and the proportion of correct responses increased from 35.4 to 81.3%.
Qualitative evaluation of the pretest workshops revealed that the initial workshop presentations were too lengthy and included excessive repetition of information. Specifically, the genetic testing objective assumed too much prior knowledge of cancer genetics. Additional resources such as fact sheets on cancer were needed. Participants commented that repetition was needed for comprehension and retention of selected concepts only. The teaching methods were viewed as innovative and effective for the workshop setting, and handout materials were also rated very positively. Qualitative evaluation also showed that some of the concepts were presented on a level that was too high for medical students and had to be clarified. These results are encouraging and indicate that exposure to the curriculum is facilitating the communication of genetics to the Native American students as planned. Specific feedback from the pretests has identified areas where changes are needed.
The genetics curriculum for the GENA project is currently being implemented in workshops at selected and culturally relevant professional meetings across the United States where Native American students are in attendance. Evaluation is carried out with each presentation of the curriculum, and minor changes are being implemented on an ongoing basis.
The curriculum development process for GENA provided powerful reinforcement of the need to focus attention on the roles and functions that cultural values may play in providing information about genetics. It is well known that individuals learn new information in a context that is largely defined by culture. For Native Americans, however, the cultural context appears to have an extraordinary level of influence on how information is perceived. It is likely that the high level of cultural influence on perception of information about genetics is strongly associated with a relatively recent history of misrepresentation of genetic research to Native Americans in a general context that is dominated by a history of exploitation. The results from the focus groups and the curriculum review suggest that an optimal design for the GENA curriculum would be one that could be implemented in a workshop format. Such a design would allow maximum flexibility in implementing the curriculum in different settings.
Although there is a heightened awareness of genetics and genetic issues, the pretest scores collected in this project suggested that the participants had relatively weak backgrounds in genetics. However, the gains demonstrated on the post-test suggest that the topics presented are of interest and that the workshop was effective in communicating information. Furthermore, with the ever-increasing amount of information about genetics coming out of the Human Genome Project and the increasing number of new products of a genetic nature being developed, Native Americans are often approached to participate in genetic testing and in the implementation of genetic research. These projects include requests for DNA samples to test for the presence of gene products or mutations. Several tribes have reported being contacted as often as three times in a single month to participate in such tests—yet there are few Native Americans with training to help interpret the requests and rarely do such requests address tribal priorities.
Finally, to our knowledge, nothing like the GENA curriculum exists for college and university students. It is important to the future of science that those trained represent the ethnic diversity of our society. Native Americans have long been underrepresented in science, and particularly in genetics. Perhaps this curriculum and project can begin to address this issue and lead to an increase in Native American geneticists. Tribal Nations frequently request that the research investigator be affiliated with their tribe and thus be more likely to conduct research that is of interest and is a priority for the local community. Members of distinct cultures have unique perspectives on the proper roles of biology and genetics within their societies. Most previous studies have been implemented without adequate participation by or partnership with Native Americans. It is likely that more can be learned when genetic research is conducted from a perspective that is culturally relevant and respectful of the participating community. By providing a curriculum aimed at describing genetics with the needs, interests, and values of Native Americans included, GENA can provide information that will establish a cultural context for the study of genetics. By including consideration of culture in their curricula, teachers of genetics will be better able to convey the complexity of their discipline. Genetic researchers can also benefit from consideration of GENA by increasing their understanding of the unique perspectives that Native Americans have toward genetics. By incorporating this understanding into their interactions with Native American populations, they will benefit by working in partnership with the community rather than simply “doing a research project on” a population. When research is conducted in partnership with a community, it is likely to focus on an area that is of interest to the community (e.g., diabetes) and subsequently results in greater cooperation. Native populations will also benefit from these interactions by learning that genetic research can be carried out in ways that are respectful of culture and of relevance to their community. It may be noted that the guiding principles and curriculum being developed in the GENA project are likely to have resonance with other culturally and ethnically diverse populations. It is to be expected that progress made in the development and implementation of the GENA program may ultimately serve as a model for development of comparable programs in other targeted communities.
We appreciate the participation and contribution of those who took part in pretesting and workshops of the curriculum. This project is funded by the National Human Genome Research Institute (R25 HG01866).
Communicating editor: P. J. Pukkila
- Received April 11, 2000.
- Accepted April 12, 2001.
- Copyright © 2001 by the Genetics Society of America