Preparing for the Future

Preparing for the Future

“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.

Getting Up to Speed

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.

Teaching the Teachers

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.


Expert Advice

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.”

HRSA Calls for More Genetics Education for Nurses

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.

The Future Is Now

Genetic testing to determine an individual’s likelihood of developing certain diseases is no longer a futuristic notion in health care. One need look no further than the Internet to find companies advertising genetic testing for various cancers–such as breast cancer, which has been linked to mutations in the BRCA1 and BRCA2 genes.

In terms of eliminating racial and ethnic disparities in health outcomes, the ability to predict a person’s genetic predisposition for developing diseases such as diabetes, coronary heart disease (CHD) and cancer–all of which disproportionately affect minority populations–holds great promise. Knowing that a patient is at a genetic risk for developing a particular disorder can enable health care providers to diagnose, treat and even cure them earlier and with better results–or even develop targeted interventions that can prevent the disease from occurring in the first place.

As research in genetics–the study of single gene disorders–forges ahead, the emphasis is gradually shifting to genomics, which recognizes that most health conditions involve multiple genes as well as other factors, such as the environment, that contribute to the “expression,” or triggering, of those genes. The huge scientific breakthrough resulting from the International Human Genome Project (HGP) is largely responsible for this shift. The HGP is an international, collaborative effort to map and sequence all of the genes that comprise human beings (known as our “genome”). More information about the HGP is available at the Web site

Entities involved in the HGP include the National Institutes of Health (NIH), which created the National Human Genome Research Institute (NHGRI) in 1989; the U.S. Department of Energy; numerous universities and research facilities throughout the United States; and international partners in the United Kingdom, France, Germany, Japan and China. As of 2001, the sequencing of the genome’s three billion base pairs of genes was approximately 90% complete; it is expected to be finished in 2003.

With this pool of knowledge about genetic risk factors for diseases filling rapidly, minority nurses can make important contributions at both the clinical and research ends. From a clinical perspective, nurses of color are uniquely qualified to educate minority patients about the health implications of this vast wealth of genetic information. On the research side, there is a huge need for more nurse scientists who can conduct genomics-based studies designed to close the gap of minority health disparities.

And to be effective patient advocates in this brave new genetic world, nurses in both disciplines must be well versed in the ethical, legal and social implications (ELSI) of genomics research and genetic testing. This includes such issues as protecting minority patients’ privacy so that research findings can’t be used to discriminate against them, and ensuring that genetic research is conducted in a culturally sensitive manner.

The Education Connection

The role of nurses in providing patients with culturally and linguistically competent genetic education is vital because today’s increasingly multicultural society consists of populations with varying beliefs about health and disease. “I see minority nurses as a link between the different cultures and this emerging scientific knowledge. They can help people bridge this information gap,” says Dale Lea, RN, MPH, assistant director of the Foundation for Blood Research’s Southern Maine Genetics Services Program, which provides genetic evaluation and counseling services for individuals and families.

For example, patients may have definitions about family rooted in their culture, such as the belief in a single ancestor, that differ from the medical community’s definition of a genetic pedigree. “Those cultural beliefs can affect the way a nurse collects information regarding a family history and even how they approach the whole subject,” adds Lea, who served as the principal investigator for a three-year NIH/NHGRI grant to develop a Practice-Based Genetics Curriculum for Nurse Educators.

In 1985, while working at a spina bifida clinic in a predominantly Mexican-American community, Maricela Aguilar, RN, MSN, was trying to ensure that her young patients’ pregnant mothers had prenatal screening to determine if their unborn child was also at risk for this disabling birth defect. So she sent them to the county hospital for maternal serum alpha feto-protein tests.

But Aguilar, who today is a clinical assistant professor in research at the Department of Pediatrics of the University of Texas Health Science Center in San Antonio, soon learned that the mothers were not going in for the screening. They were convinced that the hospital would make them abort if the test was positive, which would be contrary to their religiously and spiritually based culture. Furthermore, they rarely returned to the clinic because they felt they would be badgered to get the test.

To eliminate this cultural barrier, Aguilar began approaching prenatal testing differently. She explained to the mothers that she realized they would accept the child that God sent them, even if it was not “perfect.” However, if they were screened, they could prepare appropriately if further testing suggested that the child would likely have spina bifida.

“For every minority group, we need to understand cultural values and beliefs in order to provide culturally sensitive [genetic education],” says Aguilar, who has conducted research on how cultural beliefs affect health care patterns. “If you understand a population and its belief systems, then you’re a much better provider and more trusted in the community.”

When it comes to informing the public about the benefits and risks of genetic testing, nurses who have personal knowledge and understanding of a minority community’s culture are better equipped to guide patients in their health care decision-making process–and even more importantly, to teach them healthier lifestyle patterns that can help them beat their genetic odds of developing a hereditary disease.

“As genetic health becomes more a part of the medical landscape, it’s the associate degree and baccalaureate degree nurses who will be teaching the public this type of basic information,” believes Sonia Cunningham, RN, MS, an African-American associate professor of nursing at the University of Texas at Brownsville. “We call it culturally appropriate behavior risk reduction and prevention.”

An important aspect of this genetics-based approach to preventive education is teaching patients about environmental or lifestyle factors that can serve as a trigger for a disease-linked gene, adds Cunningham, who works with a predominantly Mexican-American population. Although this ethnic group has a genetic predisposition for developing diabetes, she explains, the manifestation often occurs because it is triggered by their diet, which is high in carbohydrates and sugar. “If they eat a diet that is more suited for their genetic makeup, [it may help prevent the expression of that gene] and they may not develop Type 2 diabetes.”

The Research Connection

The 2002 Annual Conference of the National Black Nurses Association showcased a particularly exciting example of the crucial role nurses of color can play in conducting genetic research that can make a difference in reducing minority health disparities. Two African-American nurse scientists, Ora L. Strickland, RN, PhD, FAAN, professor at the Nell Hodgson Woodruff School of Nursing at Emory University in Atlanta, and Joyce Newman Giger, RN, EdD, CS, FAAN, professor of graduate studies at the University of Alabama at Birmingham School of Nursing, presented the results of their groundbreaking study to determine genetic indicators and risk factors for CHD in pre-menopausal African-American women. (See “Translating Genetic Knowledge Into Targeted Treatments.”)

More minority nurses need to get involved in such research because they are more likely to place an emphasis on studying health problems that affect racial and ethnic minority populations, says Strickland. “Until we started looking at the high incidence of CHD in pre-menopausal African-American women, nobody was studying this,” she points out.

Giger agrees. “More minority nurses of all races need to participate in genetics and genomics research so that we can begin to answer questions about what causes disease in certain ethnic minority populations compared with other groups,” she maintains. “It’s the ‘what ifs’ that are important to understand so that we can render culturally and racially appropriate care.”

Strickland asserts that minority nurses can be more effective than their Caucasian counterparts in recruiting patients of color to participate in genetic research studies. Because they share these patients’ cultural heritage, and, in some cases, their language, they are able to explain the purpose of the research in a culturally and linguistically competent way and interpret the resulting data from a culturally knowledgeable perspective.

“The best way to reach different ethnic and racial minority populations is with people who look like them, talk like them and understand them,” Giger adds. “I believe you can teach people [from outside that culture] those learned experiences or I wouldn’t be a transcultural nurse. But there’s nothing like living those experiences yourself.”

Providing an alternative to all-white research teams can also help break down barriers of distrust resulting from memories of such racist experiments of the past as the 1932-1972 Tuskegee Syphilis Study, in which African-American men were denied treatment for syphilis while being told they were being treated for a blood disorder, so that white researchers could study the progress of the disease.

“Nurses of color know how to access minority communities and help in developing trust so that the research can be done,” says Cynthia A. Prows, RN, MSN, a clinical nurse specialist in genetics at the Children’s Hospital Medical Center in Cincinnati. “Plus, their research questions will be based on a knowledge of that community, resulting in their being more direct.”

Giger believes that minority researchers add credibility to the research. “And it shows African Americans who are potential study participants that this kind of research is nothing to be afraid of,” she says.

The Advocacy Connection

While medical and nursing experts agree that the knowledge gained from the Human Genome Project will revolutionize health care as we know it, the troubling ELSI implications make this empowering knowledge a double-edged sword.

Genetic testing can have ramifications for the rest of an individual’s life, including potential discrimination, stigmatization, and alteration of family dynamics. Even though more than 40 states have enacted legislation and more than 30 states have adopted laws designed to prevent this from happening, the reality is that genetic information can be used to discriminate against people in employment, health and life insurance, military service, etc.

People known to carry a gene that increases their likelihood of developing cancer may get turned down for health insurance. In addition to denying coverage, insurers could require applicants to undergo genetic testing and/or charge higher rates to individuals based on their genetic makeup. Minority populations can become stigmatized, as in the case of the Ashkenazi Jewish community, which has a genetic predisposition for breast cancer. Family dynamics can change when one family member decides to determine his or her genetic predisposition for a disease even though a sibling or parent may not wish to have this information.

These potential dangers make it crucial for nurses of color to serve as genetic advocates for minority patients and their communities. First, they must advocate for equal access to genetic testing and treatment. This can include helping to eliminate cultural and linguistic barriers that can prevent minority individuals from participating in genetic research or from understanding what is happening during the process.

For example, asking questions of the doctor is considered a sign of disrespect in Mexican-American culture, explains Aguilar. Therefore, patients may nod their head in agreement, even though they do not fully understand all of the information being given.

Asking patients how well they understand English or whether they can read it can help eliminate language barriers. The solution may be as simple as providing the information in another language, or using visuals to explain the tests. With serious health disparities already occurring in racial and ethnic minority populations, the use of high-tech genetic testing could potentially widen the gap if it is being accessed only by Caucasians.

For minority nurse researchers, the advocacy role includes making sure that genetic testing in minority communities is conducted in a culturally sensitive and respectful way, such as involving community leaders and sharing the findings so that the community can benefit from them. In addition, they must ensure that study participants’ anonymity is maintained and that their colleagues are behaving ethically when evaluating genetic material.

Confidentiality is the number one ELSI issue surrounding genetic research, according to Giger. “Inevitably, people want you to reveal the names of individuals who might have the [genetic] markers for a disease,” she says, adding that she and Strickland deliberately structured the database for their CHD study in a way that made it virtually impossible to determine any of the women’s identities.

“We stripped off all the identifiers, and we can’t tell who is whom,” says Strickland. “When you’re doing this kind of research, you must protect the people.”

Minority nurses also need to get involved in policymaking to help set genetics research agendas that will include and benefit the nation’s communities of color. “If we don’t get involved, a disproportionately high number of [racial and ethnic minorities] will get left behind in the decision-making,” Giger warns.

Over the years, Aguilar has served on several NHGRI committees and has frequently found herself in Washington speaking on behalf of Mexican Americans about such issues as access to care, health disparities and the necessity of using a culturally sensitive approach when presenting the HGP. “As a representative of [my ethnic] minority group, I can bring up cultural concerns that researchers need to be take into account,” she says. “Ethically, we have a moral responsibility to not just identify people who are at genetic risk for developing a disease, but also to provide them with treatment.”

Translating Genetic Knowledge Into Targeted Treatments

Genetic testing can have a profound impact on the health of individuals, families and even entire communities. Being able to identify persons who carry genetic “markers” that predispose them to developing serious diseases such as cancer, coronary heart disease (CHD), diabetes and Alzheimer’s disease offers great hope for improving health through preventive interventions, earlier diagnoses and even the development of medicines targeted to an individual patient’s unique genetic profile. In fact, it can serve as a powerful weapon in the battle to eliminate racial and ethnic disparities in health.

For example, African-American women ages 18 to 45 have a CHD death rate that is almost four times higher than that of their Caucasian counterparts. This disparity prompted a research team led by two African-American nurse scientists, Dr. Ora L. Strickland of Emory University and Dr. Joyce Newman Giger of the University of Alabama at Birmingham, to conduct a landmark study to determine whether there are genetic indicators and phenotypes (characteristics resulting from the interaction of genetic and environmental factors) that are associated with known CHD risk factors in this population of black women.

Speaking at a recent National Black Nurses Association Annual Conference, Giger explained that “CHD is multifactorial, which means that genes and environment work together to cause the disease. Reducing the risk factors associated with development of CHD in pre-menopausal African-American women–such as hypertension, obesity, high cholesterol and a sedentary lifestyle–is paramount.”

By providing black women who have been identified as having genetic indicators for CHD with preventive education and interventions, such as putting them on exercise, nutrition and stress reduction programs, nurses can reduce their risk factors in order to prevent the genetic triggering of the disease, says Giger. These risk reduction behaviors would not only improve the women’s quality of life in general, but may even prevent them from developing CHD altogether.

In addition, the insights gained from the International Human Genome Project (HGP) are already beginning to lead to the design of a new class of genetically targeted drugs for the treatment of CHD, cancer, asthma and other diseases that disproportionately affect racial and ethnic minorities. Because genetic testing can also identify persons who are at risk of responding adversely to a particular medication, it is ushering in a new era of customized treatments that can maximize effectiveness and minimize side effects, as determined by the individual patient’s genetic profile.

“The HGP revealed that all human beings, regardless of race and ethnicity, are [genetically] about 99% the same,” adds Giger. “But that 1% looms large when we’re talking about people [of color] dying in disproportionate numbers.”

Editor’s Note: In the Spring issue of Minority Nurse, the experts will discuss educational programs and resources that can help nurses and students prepare for a career in, or learn more about, the new genetics and genomics.

Landmark Human Genomics Study Seeks Genetic Causes of Diabetes

Landmark Human Genomics Study Seeks Genetic Causes of Diabetes

Several recent articles in Minority Nurse have examined how the emerging field of health care genetics and genomics has begun to revolutionize the way researchers and clinicians are working to eliminate racial and ethnic disparities in health outcomes. Being able to determine that a patient is at a genetic risk for developing conditions such as cancer and heart disease, and understanding the factors that can cause the patient’s genes to “express” (trigger) the disease, can result in more effective prevention and treatment strategies targeted to that person’s individual genetic makeup.

One of the most exciting new research projects to be launched in this area is an international collaboration that will focus on identifying the genetic factors that cause people to develop diabetes—a disease that has become a deadly epidemic among America’s minority populations. Digital Gene Technologies, Inc. (DGT), based in La Jolla, Calif., has teamed up with the French National Institute of Health and Medical Research (INSERM) for a groundbreaking study designed to identify gene markers and targets associated with the destructive T lymphocyte imbalance that leads to type 1 diabetes.

Spokespersons for the project describe it as “a bold, genomics-based approach to understanding the molecular mechanisms that lead to diabetes.” The French research team, led by Dr. Jean Imbert of the Institute Paoli-Calmettes in Marseille, will use TOGA®, a pioneering gene expression evaluation technology developed by DGT, to examine human blood samples from diabetic and non-diabetic populations and search for the genes responsible for the onset of the T-cell imbalance that initiates diabetes.

Dr. Imbert believes the study, when completed, will help focus attention on potential new targets for controlling and preventing diabetes. “We expect our results to reveal novel molecular signatures that may help us better diagnose at-risk subjects and to lead us towards new strategies for preventive intervention,” he says.

Photo by GDS Infographics