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From summer institutes and nursing school courses to workshops and online resources, many options are available to help minority nurses learn about the health care implications of the new genetics and genomics. Editor's Note: this was the second article in a two-part series. Read the first article, "The Future Is Now". By Ruth Carol
A primary reason for this is the fact that genetics and genomics have historically not been incorporated into the nursing school curriculum. Nine years ago, when Joyce Newman Giger, RN, EdD, APRN, BC, FAAN, professor of graduate studies at the University of Alabama at Birmingham School of Nursing, joined the faculty and wanted to teach genetics, she was surprised by the response. "They wanted me to go away," she recalls.
If genetics is introduced in biology courses, it is not reinforced in the nursing core courses or clinicals, adds Cynthia A. Prows, RN, MSN, program director for the Genetics Program for Nursing Faculty (GPNF) at the Children's Hospital Medical Center in Cincinnati.
As an example, the time necessary to identify a gene has accele-rated from years to months to weeks and is now occurring daily. As of 2001, the sequence of the genome's three billion base pairs of genes was approximately 90% finished, with completion expected in spring 2003. "Previously, the teaching of genetics [in nursing] has been associated with single gene disorders, such as cystic fibrosis, and chromosomal anomalies, like Down Syndrome," says Nancy James, RN, MA, program coordinator of the Genetics Interdisciplinary Faculty Training (GIFT) Program at Duke University in Durham, N.C. "Nurses must learn to start looking through a genetic lens because we now know that all common, complex disorders, such as diabetes, arterial sclerosis, cancers and depression, have a genetic component. As clinicians, we must be able to incorporate this genetic knowledge into practice."
Still another factor is that many minority nurses don't continue their education past the two-year diploma or associate's degree level. Very often, the biggest obstacle to obtaining an advanced degree is financial constraints. "Minority nurses tend to hold associate degrees because they can't afford a four-year college," explains Ora L. Strickland, RN, PhD, FAAN, an African-American professor at the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta. "But in order to be a scientist [and conduct genetic research], you have to have a PhD. With most minority nurses stuck at the associate degree level, we don't have enough of them who can move to the PhD level rapidly." In the wake of the HGP, however, a growing number of nursing schools are attempting to remedy the genetics education gap, even if that means curtailing other subjects, such as chemistry, to make room. For example, the School of Nursing at the University of Washington in Seattle received funding from the Health Resources and Services Administration (HRSA) to begin teaching genetics four years ago. "The impetus was the new advances in biotechnology and genetic research," says Betty Gallucci, PhD, a professor at the school. "It was the feeling that genetics research will provide so many health benefits that nurses needed to be knowledgeable about it." Last summer, the university received an NHGRI-funded grant to expose underrepresented minority students to genomics education. The goal of the Genomics Outreach for Minorities program is to provide undergraduate nursing students with opportunities to gain experience in a research setting, such as a laboratory.
"Genetics is advancing so rapidly that we really need to get people up to speed quickly," Prows emphasizes. "And we're not going to get genetics into the nursing curriculum unless we reach the nursing faculty and make them comfortable with teaching it." A key component of the GPNF, which is funded by the Ethical, Legal, and Social Implications (ELSI) Research Program of the NHGRI, is the annual onsite Genetics Summer Institutes (GSIs), now in its seventh year. "The nursing faculty that attend the GSIs learn genetics on a basic level," says Prows. "We try to take away the mystery and provide a foundation for them so they can go back to their institutions and use the information either in their teaching or research." Last year, a grant from the ELSI Program and HRSA's Bureau of Health Professions, Division of Nursing, enabled the program to expand by adding an online Web-Based Genetics Institute (WBGI). Based on the GSIs' content, the 18-week WBGI is team-taught by program instructors and guest lecturers. The GPNF also holds a two-day genetics update workshop every two years for past GSI and WBGI participants. The third biennial workshop will be held this June. To encourage minority nurses to participate in both the GSI and the workshop, the GPNF waives the registration fee and provides travel scholarships through an ELSI Program grant. As a result, nearly 15% of the enrollment consists of nurses of color. Similarly, the Web program's fee is waived for minority nurses.
"It requires only commitment to the idea," says Cunningham, who is African American. "Genetics needs to be integrated into the curriculum at every nursing school at every level." Based on a similar premise as the GPNF, the GIFT program at Duke University brings together graduate faculty teams from nurse practitioner, nurse-midwifery and graduate physician assistant programs from across the country to learn about advances in genetics and methods to facilitate incorporating genetics throughout graduate curricula. The educational program consists of three parts. Phase I is an online genetics primer that addresses key concepts, such as genes, chromosomes, alleles, types of genetic mutations, genetic risk and inheritance patterns, and taking genetic family histories. Phase II is an intensive week of on-campus lectures, seminars, opportunities to practice family history-taking using standardized patients, cultural sensitivity workshops and strategies for faculty development and methods of curricular revision. In the final phase, faculty team members have access to online resources-such as recorded lectures, teaching modules, faculty forums and "ask the expert" forums-to assist them in incorporating genetics into the curriculum at their own institutions.
For nursing faculty who can't attend a genetics institute or workshop, there is the Foundation for Blood Research's Practice-Based Genetics Curriculum for Nurse Educators. This field-tested curriculum package consists of four teacher-assisted modules: ethical, legal, and social issues in genetic testing; high-risk pregnancy and prenatal diagnostic procedures; periconceptional prevention and prenatal screening; and late diagnosis and presymptomatic testing of genetic conditions. The package includes didactic materials, data collection materials, resource and supplemental educational materials, and evaluation methods. Dale Lea, RN, MPH, APNG, FAAN, assistant director at Southern Maine Genetics Service, served as the principal investigator for the three-year grant from the National Institutes of Health and the NHGRI to develop the genetics curriculum modules. "It's difficult for faculty to integrate a new concept into an already crowded curriculum," she says. "So we wanted to develop an approach that would make that less of a barrier." Some nursing faculty members who have purchased the modules have used pieces of them to integrate an aspect of genetics into their curriculum, Lea reports. Others have created a genetic symposium, supplementing it by bringing in professors to talk about cultural issues, patients to talk about their experiences, or scientists to talk about research. Still others have used the modules for continuing education. Cunningham, for example, has used them to teach continuing education courses in genetics to graduate nurses in the community.
Graduate students pursuing a master's or PhD should seek out individuals involved in genetic/genomic research who could serve as mentors. One way to make these contacts is to become a member of professional associations like the International Society of Nurses in Genetics (ISONG) or the National Coalition for Health Professional Education in Genetics, an interdisciplinary group that promotes education and access to information about advances in human genetics. "Attending ISONG meetings is a great way to make contacts, network and find out who's doing genetic research in graduate programs," says Gallucci. Research-minded nurses with advanced degrees will also want to explore the opportunities offered through HRSA, NINR and the ELSI Research Program. The latter program is a rich resource for nurses, according to Lea, and you don't have to have a PhD to participate in an ELSI project. But perhaps the most exciting opportunities for minority nurse researchers are those available from the NHGRI as part of its Initiatives and Resources Related to Minority and Special Populations. In May 2001, the National Advisory Council for Human Genome Research approved an action plan "for the inclusion of underrepresented minority groups in research training, research collaborations, and education and outreach activities supported by all components of the [NHGRI]." To achieve this goal, the Institute offers such resources as:
For More Information Genetics Program for Nursing Faculty (GPNF) Genomics Outreach for Minorities Program Genetics Interdisciplinary Faculty Training (GIFT) Program The International Society of Nurses in Genetics (ISONG) The National Coalition for Health Professional Education in HRSA, Bureau of Health Professions, Division of Nursing National Human Genome Research Institute NINR Summer Genetics Institute (SGI) Practice-Based Genetics Curriculum for Nurse Educators Here is some additional information about this research: The study was sponsored by the University of Alabama at Birmingham
and was funded by a grant from the U.S. Department of Defense, University
of the Health Sciences, Tri-Service Military Grant Program. The principal
investigator (PI) who led the research team was Dr. Joyce Newman Giger,
professor of graduate studies at the University of Alabama at Birmingham
School of Nursing. The two co-PIs were Dr. Ora L. Strickland, professor
at the Nell Hodgson Woodruff School of Nursing at Emory University in
Atlanta, and Dr. Herman Taylor, director of the National Heart, Lung
and Blood Institute's Jackson Heart Study in Jackson, Mississippi.
Editor's Note: this was the second article in a two-part series. Read the first article, "The Future Is Now".
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