“The burgeoning knowledge from the International Human Genome Project and other genetic research has made it possible to identify individuals at risk for disease, and to diagnose and treat disease in ways that until recently were not possible. These discoveries can improve health through early diagnosis, health promotion activities, more targeted treatments and increased understanding of prevention. All health care professionals need to understand the implications of genetic knowledge and develop skills competencies in genetics, including the social, ethical, legal, economic and policy implications.”
--Suzanne L. Feetham, RN, PhD, FAAN, senior fellow, Health Resources and Services Administration (HRSA)
If you think that as a minority nurse caring for patients in a hospital, teaching at an academic institution or working to eliminate racial and ethnic health disparities in a community-based setting, genetics has no bearing on your activities, think again. According to the National Human Genome Research Institute (NHGRI), all diseases have a genetic component, whether inherited or resulting from the body’s response to environmental stresses.
Today, learning about the role of genetics--the study of single gene disorders--and genomics--which recognizes that most health conditions involve multiple genes combined with environmental factors that contribute to the “expression” or triggering of those genes--in preventing and treating diseases that disproportionately affect minority populations is quickly becoming an imperative for nurses of color. However, because the knowledge gained from the breakthrough International Human Genome Project (HGP) is still so new, very few nurses--regardless of race or ethnicity--have had much exposure to this emerging field that is already beginning to revolutionize health care as we know it.
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.
Even when genetics is taught to nursing students, it is usually limited to the study of birth defects, never addressing adult onset diseases. But as Giger, who is African American, so aptly puts it, “Genetics is about diseases that occur from the womb to the tomb.”
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.
Prior to the mid-1980s launching of the HGP--an international collaborative effort to map and sequence all of the genes that comprise human beings (known as our “genome”)--there was a lull of discoveries in that area. Since then, however, scientists have been amassing genetic information at warp speed.
As an example, the time necessary to identify a gene has accelerated 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.”
Another barrier is that some nurses are apprehensive about taking more advanced courses in the biological sciences, believing that it is too difficult a subject matter to comprehend. “Many nursing schools don’t integrate molecular biology into the curriculum because [they feel] ‘it is too hard for nurses to understand,’ but that’s ridiculous,” Giger argues.
“We take biology, chemistry, anatomy and physiology.” 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.
Many experts believe that the best way to teach nurses about genetics and genomics is to educate the educators. That’s why the goal of programs like GIFT and GPNF is to increase nursing faculty’s knowledge about genetics and its clinical application as well as to increase the amount of genetics content in nursing curricula.
“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 ELSI 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.
Since attending the GSI in 1998, Sonia Cunningham, RN, MS, associate professor of nursing at the University of Texas at Brownville, has integrated genetics throughout her curriculum. She not only lectures on the subject, but also assigns research projects, writing assignments and other enrichment activities to provide additional genetics content. And she believes other nursing faculty will find it easy to do the same.
“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.
The GIFT program will accept 10 faculty teams this year and 10 teams in 2004. The cost of team members’ participation is covered by a cooperative agreement from HRSA’s Division of Nursing and its Division of Medicine and Dentistry. In addition, participants receive a stipend to help them implement curricular change at their institutions. Although the program is targeted to faculty who teach at the graduate level, James points out that many of the participating institutions offer undergraduate nursing degrees. Therefore, team members can implement the educational tools in whatever program they feel is appropriate.
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.
One other resource worth mentioning, even though it is not exclusively for faculty and emphasizes research rather than teaching and curriculum development, is the Summer Genetics Institute (SGI) sponsored by the National Institute of Nursing Research (NINR), Division of Intramural Research. Targeted to graduate students and advanced practice nurses as well as nursing faculty, this full-time summer training program features classroom and laboratory components designed to provide a foundation in genetics for use in clinical practice and research. The program is highly competitive, accepting only 14 to 18 participants each year.
If you’re a nursing student at the undergraduate level who wants to learn more about the role of genetics in health care, the experts interviewed for this article suggest taking electives in the basic biological sciences, or better yet, attending a nursing school that includes genetics in its curriculum. Prows recommends asking your clinical instructor to assign you to patients who have illnesses with a hereditary component, such as sickle-cell disease, Huntington’s disease or breast cancer. Volunteer work with local chapters of groups dedicated to fighting these ailments, such as the Sickle-Cell Disease Association of America, can give students a first-hand look at those conditions, Gallucci suggests.
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 nurse researchers of color 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:
• Research training and career development programs for underrepresented minorities at all educational levels, from high school students to faculty.
• Opportunities to participate in collaborative research projects focusing on diseases that disproportionately affect minority populations.
• Community outreach and public education resources that nurses can use to help minority communities understand the implications of genome-related research.
• Funding opportunities--including research, career development, training and education grants--for researchers, faculty and students who are members of minority populations or affiliated with minority institutions.
“The area of genetics is a wide-open field,” concludes Strickland. “Although we know a lot, there’s still so much more to be known. If minority nurses aren’t involved in genetics research and applying genetic knowledge at the bedside, we will be left behind.”
Fewer than 10 master’s-level and doctoral programs currently exist to prepare nurses in genetics, according to a recent report released by an expert panel convened by the Health Resources and Services Administration. The report, entitled “Expert Panel on Genetics and Nursing: Implications for Education and Practice,” identified five principles for improving genetics education among nurses:
• To promote access to quality health care for all, genetic education should focus on preparing providers to care for underserved, vulnerable and special needs populations.
• Academic nursing leaders and health professional faculty should be committed to a long-term plan to meet the genetic care needs of the public by 2010 and beyond.
• Education programs should be interdisciplinary and focus on the translation of genetic knowledge into practice and research.
• Genetic content should include molecular biology (genomics and protenomics) and the social, ethical, economic, and legal implications of genetic knowledge.
• The nursing workforce should be culturally competent; should reflect cultural, racial and ethnic diversity; and should be distributed geographically to serve in all areas of the country.