Incorporating human genetics into dietetics curricula remains a challenge

Incorporating human genetics into dietetics curricula remains a challenge

RESEARCH Perspectives in Practice Incorporating Human Genetics into Dietetics Curricula Remains a Challenge CONNIE E. VICKERY, PhD, RD; NANCY COTUGNA...

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RESEARCH Perspectives in Practice

Incorporating Human Genetics into Dietetics Curricula Remains a Challenge CONNIE E. VICKERY, PhD, RD; NANCY COTUGNA, DrPH, RD

ABSTRACT This descriptive survey was undertaken to assess integration of genetics into undergraduate didactic dietetic education. The response rate was 35% (n⫽82) of all directors (N⫽232) of accredited or approved Didactic Programs in Dietetics. Although most directors (n⫽58 of 82) agreed that genetics is an important component of dietetics education, they expressed concerns about alreadycrowded curricula and lack of time, resources, and knowledge. Thirty-eight directors indicated that they had no familiarity with the core competencies in genetics for all health professionals. Genetics is included in some way in 69 of the 82 programs that responded. Courses in which genetics was most likely to be incorporated included nutrition, physiology, microbiology, and biochemistry. Only four directors reported a required course entirely devoted to genetics. Programs were most likely to meet the knowledge competency of the role of genetic factors in maintaining health and preventing disease and least likely to address the genetic counseling process and indications for referral to specialists. Applications of genetics in dietetics will continue to grow in importance. Evidence from this study indicates that current curricula provide little to no genetics content. Nutrition faculty must become more knowledgeable about genetics before being expected to increase genetics content in entry-level dietetics curricula. J Am Diet Assoc. 2005;105:583-588.

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dvances in human genetics are changing the concept and delivery of health care in the 21st century. The Human Genome Project is expected to revolutionize medical care, medical nutrition therapy, preventive medicine, public health, and nutrition policy (1). The ability to tailor therapies and predict both positive and negative outcomes through the analysis of genotype will lead to an increased role for genetics in the delivery of health care.

C. E. Vickery and N. Cotugna are professors, Department of Health, Nutrition and Exercise Sciences, University of Delaware, Newark. Address correspondence to: Connie E. Vickery, PhD, RD, Department of Health, Nutrition and Exercise Sciences, 234A Alison, University of Delaware, Newark, DE 19716-3750. E-mail: [email protected] Copyright © 2005 by the American Dietetic Association. 0002-8223/05/10504-0003$30.00/0 doi: 10.1016/j.jada.2005.01.007

© 2005 by the American Dietetic Association

Some of the ways that genetics will affect the practice of nutrition include improved diagnostics to test for predisposition to disease, enhanced prediction of individual differences in medical therapies and drugs, and the development of foods or diet plans matched to an individual’s genetically determined ability to use them. In addition to the medical aspects of genetics, other areas related to food and nutrition that will continue to be affected by genetics research include livestock and agricultural biotechnology, resulting in the production of healthier animals and disease-resistant, more nutritious crops and functional foods (2). A new field of nutrition research, nutrigenomics, has also emerged, representing the integration of genomics and classical nutrition research with the goal of developing individualized dietary interventions to prevent disease or improve health status. New ways of predicting, preventing, and treating disease will require changes in thinking as well as practice. Dietetics educators have been challenged to integrate genetics into their educational programs. As early as 1999, Patterson and colleagues (3) suggested that educators needed to act immediately to teach a new vocabulary and body of knowledge to ensure that future professionals are prepared for practice in the new era of genetics. Some have referred to this as genetic literacy (4). Undergraduate education in dietetics should require coursework on diet and gene interactions, and human genetics should be included as a topic area on the Registration Examination for Dietitians (3). Examples of genetics-related objectives applicable to dietetics education have even been suggested (5). Yet in 2003, Debusk noted that “none of the academic curricula for the health-related professions included more than a superficial overview” of this topic, even though it is becoming fundamental to health maintenance (1). One guide for developing the registration examination is the Dietetics Practice Audit, which is conducted every 5 years (6). In the 2000 audit, only 1% of both entry-level and more experienced practitioners responded positively that the statement “provided genetic counseling” relates to their current or anticipated activities, tasks, or responsibilities. Only 4% and 3%, respectively, anticipated they would be performing this activity in the next 3 years. When a sufficient frequency of responses indicates that this topic is important to entry-level practice, then this may be seen as justification for inclusion on the registration examination in greater depth. The call for new tools and new training in genetics has been made. If personalized health care is the wave of the future, dietetics education must be addressing these issues. The National Coalition for Health Professional Education in Genetics has developed a set of recommendations for core

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Table. Results of core competenciesa met by 69 DPDb programs including genetics in their curricula Core competencies Knowledge Role of genetic factors in maintaining health and preventing disease. (1.5)d Basic human genetics terminology. (1.1) Basic patterns of biological inheritance and variation, both within families and within populations. (1.2) How identification of disease-associated genetic variations facilitates development of prevention, diagnosis, and treatment options. (1.3) Difference between clinical diagnosis of disease and identification of genetic predisposition to disease. (1.6) Role of behavioral, social, and environmental factors (lifestyle, socioeconomic factors, pollutants, etc) that modify or influence genetics in the manifestation of disease. (1.7) Importance of family history (minimum three generations) in assessing predisposition to disease. (1.4) Influence of ethnoculture and economics in the prevalence and diagnosis of genetic disease. (1.8) Ethical, legal, and social issues related to genetic testing and recording of genetic information (eg, privacy, the potential for genetic discrimination in health insurance and employment). (1.15) Range of genetic approaches to treatment of disease (eg, prevention, pharmcogenomics/ prescription of drugs to match individual genetic profiles, gene-based drugs, gene therapy). (1.11) One’s own professional role in the referral to genetics services, or the provision, follow-up, and quality review of genetic services. (1.17) Influence of ethnicity, culture, related health beliefs, and economics in the clients’ ability to utilize genetic information and services. (1.9) Potential physical and/or psychosocial benefits, limitations, and risks of genetic information for individuals, family members, and communities. (1.10) Indications for genetic testing and/or gene-based interventions. (1.14) Resources available to assist clients seeking genetic information or services, including the types of genetics professionals available and their diverse responsibilities. (1.12) The history of misuse of human genetic information (eg, eugenics). (1.16) Components of the genetic counseling process and the indications for referral to genetic specialists. (1.13) Skills Explain basic concepts of probability and disease susceptibility and the influence of genetic factors in maintenance of health and development of disease. (2.3) Use effectively new information technologies to obtain current information about genetics. (2.6) Obtain credible, current information about genetics, for self, clients, and colleagues. (2.5) Participate in professional and public education about genetics. (2.8) Gather genetic family history information, including an appropriate multigenerational family history. (2.1) Effectively use new information technologies to obtain current information about genetics. (2.7) Safeguard privacy and confidentiality of genetic information of clients to the extent possible. (2.16) Educate clients about availability of genetic testing and/or treatment for conditions seen frequently in practice. (2.9) Provide appropriate information about the potential risks, benefits, and limitations of genetic testing. (2.10) Identify clients who would benefit from genetic services. (2.2) Seek assistance from and refer to appropriate genetics experts and peer support resources. (2.4) Educate clients about the range of emotional effects they and/or family members may experience as a result of receiving genetic information. (2.13) Explain potential physical and psychosocial benefits and limitations of gene-based therapeutics for clients. (2.14)

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No. respondingc

Genetics Integrated

Don’t Know

68 67

61 60

5 4

68

57

5

67

53

7

67

48

9

68

53

10

65

36

10

67

26

14

67

24

11

67

21

13

67

17

13

67

15

19

67 67

15 12

16 14

67 67

8 8

18 17

67

3

18

68

53

8

67 66 66

34 26 19

14 14 15

67

17

13

67

17

19

67

17

13

66

16

15

67 66

16 14

14 14

68

10

18

67

9

13

67

9

13

Table. Results of core competenciesa met by 69 DPDb programs including genetics in their curricula (continued) No. respondingc

Core competencies Inform clients of potential limitations on maintaining privacy and confidentiality of genetic information. (2.17) Provide, and encourage use of, culturally appropriate, user-friendly materials/media to convey information about genetic concepts. (2.12) Discuss costs of genetic services, benefits, and potential risks of using health insurance for payment of genetic services, and potential risks of discrimination. (2.15) Provide clients with an appropriate informed consent process to facilitate genetic testing decision-making. (2.11) Attitudes Appreciate the sensitivity of genetic information and the need for privacy and confidentiality. (3.2) Seek coordination and collaboration with interdisciplinary team of health professionals. (3.5) Recognize when personal values and biases with regard to ethical, social, cultural, religious, and ethnic issues may impact or interfere with care provided to clients. (3.9) Support client-focused policies. (3.10) Appreciate the importance of sensitivity in tailoring information and services to client’s culture, knowledge, and language level. (3.4) Demonstrate willingness to update genetics knowledge at frequent intervals. (3.8) Recognize philosophical, theological, cultural, and ethical perspectives influencing utilization of genetic information and services. (3.1) Recognize the limitations of one’s own genetics knowledge at frequent intervals. (3.7) Recognize the importance of delivering genetic education and counseling fairly, accurately, and without coercion or personal bias. (3.3) Speak out on issues that undermine clients’ rights to informed decision making and voluntary action. (3.6)

Genetics Integrated

Don’t Know

67

7

13

67

5

13

67

2

13

67

1

17

67 67

40 37

12 12

68 67

36 35

15 16

67 67

34 33

13 16

67 67

28 23

15 17

67

21

18

67

21

18

a

Core Competencies of Genetics Essential for All Health Care Professionals (7). DPD⫽Didactic Program in Dietetics. Not every question was answered. d Number corresponds to the listing in the published core competencies (7). b c

competencies in genetics that they regard as essential for all health professionals (7). The Commission on Accreditation for Dietetics Education’s (CADE) most current list of foundation knowledge and skill requirements for didactic programs in dietetics states that “graduates will have knowledge of genetics” (8). This knowledge statement falls under the area of physical and biological sciences. To date, no formal studies have examined genetics or genetics-related content of dietetics education programs (5). The purpose of this study was to assess the integration of genetics into undergraduate didactic dietetic education. Specifically, we sought to describe the professional background, including training regarding genetics, of those educators responsible for assuring compliance with CADE’s list of required knowledge, skills, and competencies for entry-level dietetics education programs; to identify issues affecting the inclusion of genetics in curricula; to determine how and where genetics is being taught; and to distinguish which core competencies are being addressed. METHOD Design and sample A descriptive survey of the integration of the topic of genetics into the dietetics program curricula was con-

ducted. The population for the study included all directors (N⫽232) of accredited or approved Didactic Programs in Dietetics (DPDs) listed on CADE’s Web page as of January 2003. The final sample consisted of 82 surveys, for a response rate of 35%. Measures The four-page survey instrument was designed by the authors, modeled with permission from a study to determine the teaching of genetics in undergraduate nursing programs (9). The questionnaire was reviewed by faculty with extensive experience in dietetics education to establish content validity. Modifications were made based on their assessment. Demographic data were collected about each director and the program/institution. The opinion of directors was sought about the impact of the topic of genetics on dietetics education and related barriers to inclusion in their respective programs by asking the extent to which each agreed or disagreed with five statements. A 5-point Likert scale was used, where 1⫽strongly disagreed, 5⫽strongly agreed, and 3⫽neutral, to allow for those respondents who were undecided. Directors who reported that their programs currently included genetics in the curricula were queried to determine inclusion of specific

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core competencies relative to skills, knowledge, and attitudes. Included along with yes/no forced-choice answers was a “don’t know” response. Competencies were drawn from the set of Core Competencies of Genetics Essential for All Health Care Professionals (7). Open-ended questions were included to elicit comments that could not be captured by forced-choice questions. Procedures Approval was obtained from the Human Subject Review Board of the University of Delaware. A cover letter explained the purpose of the survey, assured anonymity of responses, and offered respondents the opportunity to be included in a drawing as an incentive for participation. Completion of the survey required approximately 15 minutes. Surveys did not contain identifiers linking the data to respondents. A self-addressed, postage-paid envelope was included to promote survey returns. A follow-up reminder was mailed to further encourage those who had not returned questionnaires within 10 weeks. Descriptive statistics were used to analyze the data applying the SPSSX Statistical Package for Social Sciences (version 6.14, 1999, SPSS Inc, Chicago, IL). RESULTS AND DISCUSSION Demographics indicated that a slight majority of DPD directors (44 of 82) were 50 years or older. Eighteen have been in dietetics education 10 years or less, 30 directors for 11 to 20 years, and 33 directors have 21 years or more experience. One individual did not respond to this question. A doctorate was held by 56 directors, with the remaining 26 holding a master’s degree. Most DPD directors (n⫽58 of 82) agreed that genetics is an important component of dietetics education; four disagreed (mean Likert score, 3.97⫾0.89). This was reflected in the qualitative data that one director’s comment summarized well, “I believe the Human Genome Project will have an impact on the future practice of dietetics in terms of nutrient requirements and targeting nutrition interventions.” Many DPD directors (n⫽39) responded that their institutions strongly supported integration of genetics in the curriculum (mean Likert score, 3.59⫾0.84). Yet there were concerns expressed that “the scope and competencies and expanse of subject matter that is currently required in DPD programs has exceeded the capability of the undergraduate student— especially when 5 or more years of education are required at a substantial cost for an average salary of $35,000 —and especially for small programs.” Time was identified as a barrier (n⫽52) more often than lack of resources (n⫽44) or knowledge (n⫽42); mean Likert scores were 3.81⫾1.09, 3.47⫾1.10, and 3.38⫾1.13, respectively. There was a wide range of responses as indicated by the standard deviations, although strong agreement was evident (strong agreement being defined as a mean Likert score ⬎3.5). An open-ended question was used to capture the means by which instructors’ knowledge about nutrition and genetics was enhanced. Five of the 14 who addressed the question indicated that they had attended programs offered by the American Dietetic Association (ADA) Di-

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etetic Educators’ Practice Group at the Food & Nutrition Conference & Expo. Six directors had attended non– ADA-sponsored workshops or seminars. Reading was identified by eight directors with specific reference (n⫽3) to Genetics: The Nutrition Connection written by DeBusk (1) and published by ADA. One individual had advanced coursework on the topic and another had attended the 1999 HuGem II Project. Thirty-eight DPD directors indicated they had no familiarity with the recommendations for core competencies in genetics for all health professionals (0 on a scale of 0 to 10). Only one director believed his or her knowledge level deserved a rating of 10. The mean for the entire group (n⫽82) was 2.17⫾2.62. Sixty-nine (84%) of those responding indicated that genetics is included in some form in the curricula. Of the 13 remaining, four directors indicated they were very interested in integrating genetics into their respective programs, one expressed no interest, and the remaining were somewhat interested. From a forced-choice list, courses in which genetics is most likely to be incorporated included nutrition (n⫽43 of 69), physiology (n⫽30), microbiology (n⫽26), and biochemistry (n⫽26). Courses identified under “other” included foods and environmental health. Only four directors reported that a required course entirely devoted to genetics was included in the curricula.

The hallmark of the CADE Standards of Education is flexibility for each program to interpret how a knowledge statement will be addressed. Sixteen DPD directors noted nutrition/dietetics courses in which genetics is integrated. Courses dealing with medical nutrition intervention were most likely to include genetics (n⫽11), followed by advanced nutrition (n⫽8) and life-cycle courses (n⫽6). Other courses that were identified as having the topic included were contemporary nutrition/seminar (n⫽3), nutrition assessment (n⫽2), foods-related courses (n⫽2), introductory nutrition (n⫽1), and nutrition counseling (n⫽1). Of those who indicated that genetics is integrated in the curricula (n⫽69), the favored form of instruction seems to be the lecture (n⫽67), followed by case study (n⫽26) and seminar (n⫽14). Other less-frequently used teaching methods included computer-based learning, practicums, and videos. To the open-ended choice “other,” directors added laboratory work and critical reading of articles. None mentioned problem-based learning as a choice of delivery. Results were in agreement with a similar study of nursing curricula that also identified lecture as the leading teaching method, followed by video and case studies (10). Most DPD directors who indicated that genetics was integrated in their curricula (n⫽69) were able to identify whether each core competency was met. The Table identifies the inclusion of core competencies, ordered by frequency. For example, most programs were likely to meet the knowledge competency of the role of genetic factors in maintaining health and preventing disease (n⫽61). Programs

Provider/descriptor

Web address

The National Human Genome Research Institute. Supports genetic and genomic research; investigation into the ethical, legal, and social implications surrounding genetics research; and educational outreach activities in genetics and genomics.

http://www.genome.gov/About/

Human Genome Project Information. Provides topical and alphabetical Web site indexes.

http://www.ornl.gov/sci/techresources/Human_Genome/toc_expand. shtml

Science Magazine’s Functional Genomics. Provides news, research, and resources on genomics and postgenomics.

http://www.sciencemag.org/feature/plus/sfg/

Medicines By Design. Explains how scientists unravel the many different ways medicines work in the body and how this information guides the hunt for drugs of the future. Web site of the National Institute of General Medical Sciences, National Institutes of Health.

http://www.nigms.nih.gov/medbydesign/

The Foundation for Genetic Education & Counseling. Promotes understanding of human genetics and genetic medicine among health professionals and the public.

http://www.fgec.org/

Human Genome Education Model Project II. Education on genetic issues for health care professionals. Site is for archival informational purposes only. Content will not be updated.

http://www.georgetown.edu/research/gucdc/hugem/

Challenges in Communicating Genetics: A Public Health Approach. Office of Genomics and Disease Prevention, Centers for Disease Control and Prevention.

http://www.cdc.gov/genomics/info/reports/program/communicate. htm

Human Genetics Curricula in the Allied Health Professions.

http://www.health.eku.edu/Genetics/HumanGenetics.htm

Genomic Competencies for the Public Health Workforce. Competencies are defined as applied skills and knowledge that enable members of the public health workforce to effectively practice public health.

http://www.cdc.gov/genomics/training/competencies/comps.htm

Clinical Genetic Education Resources. Genetics Education Center, University of Kansas Medical Center. Provides links to curricula, courses, cases, exams, conferences, glossaries, and references.

http://www.kumc.edu/gec/prof/genecour.html

A World of Genetics Societies. Provides links to worldwide genetic societies and organizations.

http://genetics.faseb.org/genetics/

International Society of Nurses in Genetics. Resources for nurses to incorporate new knowledge about human genetics into their practice, education, and research activities.

http://www.isong.org/

Genetics Education Program for Nurses. Genetics educational opportunities and resources.

http://www.cincinnatichildrens.org/ed/clinical/gpnf/default.htm

Figure. Web site resources for genetics education.

were least likely to address components of the genetic counseling process and the indications for referral to genetic specialists (n⫽3). Similarly, although most programs promoted the skill of explaining basic concepts of probability and disease susceptibility and the influence of genetic factors (n⫽53), only one program developed the skill of providing clients with an appropriate informed consent process to facilitate genetic testing decision-making. The low response rate, 35% (82 of 232 directors surveyed) is a limitation of this study, questioning whether the results can be generalized. Erskine (11), commenting

on a low response to a broadcast e-mail regarding genetics in dietetics education, suggested that it could be an indication of educators’ discomfort with the topic of genetics. The hallmark of the CADE Standards of Education is flexibility for each program to interpret how a knowledge statement will be addressed. This lack of any framework providing advice about what aspects of genetics should be included in the curricula may account for variations in courses in which the topic is found. Clarification as to what should be addressed in order to give students “a

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knowledge of genetics” is left to the discretion of each program. Emphasizing what is important for dietetics professionals to know relative to genetics will necessitate more dialogue and collaboration. Core genetics knowledge that will be expected of dietetics professionals must be identified. CONCLUSIONS Advances in human genetics are rapidly changing the scope of information and care that can be provided to patients, clients, and health care consumers. Applications of genetics to the practice of nutrition and dietetics will continue to grow in importance. It has been predicted that within the next 2 decades or so the genetic contribution to the etiology and pathogenesis of almost all diseases will be recognized (12). If we are to capitalize on opportunities offered by this burgeoning paradigm, students will need to be armed with knowledge and skills as well as an awareness of the ethical, legal, and social implications involved to provide genomic-based nutrition services. The evidence from this study indicates that current curricula of the programs responding—approximately one third of all DPD programs—provide little or no genetics content. Nutrition faculty must become more knowledgeable in genetics before they can be expected to increase genetics content in entry-level dietetics curricula. Although incorporating the principles of human genetics into dietetics education is a challenge, it is one that must be addressed now. To prepare dietetics professionals of the future to offer nutrition care in the 21st century, educators must accept the responsibility and move forward in a timelier manner to integrate genetics into dietetics curricula. There are a variety of resources available to the educator and health care practitioner—recently-published textbooks; professional courses, workshops, and meetings; self-education programs; and Internet sites. The Core Competencies of Genetics Essential for All Health Care Professionals (7) provides direction to educators for integrating genetics into curricula. As a starting point, Kauwell (5) created a list of genetics-related objectives using themes from these National Coalition for Health Professional Education in Genetics core competencies and elements of CADE’s knowledge and skill requirements. Examples of learning activities were also offered. As part of the former Health Resources and Services Administration Bureau of Health Professions’ Human Genetic Project, a team of professionals from 10 health disciplines collaborated to develop strategies for infusing genetics into the discipline-specific curricula. The dietetics component can be accessed at www.health.eku.edu/Genetics/Dietetics.htm. The Human Genome Project: Exploring Our Molecular Selves is a multimedia education kit initially developed for high school students and the interested public (13). It is currently available for downloading or online viewing.

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The National Cancer Institute has an online tutorial, Understanding Genetic Testing, which explores the benefits and limitations of gene testing and explains how mutations occur (14). Professional organizations devoted to genetics such as the American Society of Human Genetics and the National Society of Nurses in Genetics provide Internet sites and links to genetics education and resources information. A list of additional available resources is provided in the Figure. References 1. DeBusk R. Genetics: The Nutrition Connection. Chicago, IL: American Dietetic Association; 2003. 2. Ordovas JM. Nutrigenomics: The impact of the Human Genome Project in health and nutrition. DEPLine. 2002;23:1,10. 3. Patterson RE, Eaton DL, Potter JD. The genetic revolution: Change and challenge for the dietetics profession. J Am Diet Assoc. 1999;99:1412-1420. 4. McInerney JD. Education in a genomic world. J Med Philos. 2002;27:369-391. 5. Kauwell GPA. A genomic approach to dietetic practice. Are you ready? Top Clin Nutr. 2003;18:81-91. 6. Rogers D, Leonberg BL, Broadhurst CB. 2000 Commission on Dietetic Registration Dietetics practice audit. J Am Diet Assoc. 2000;102:270-292. 7. Jenkins J, Blitzer M, Boehm K, Feetham S, Gettig E, Johnson A, Lapham EV, Patenaude AF, Reynolds PP, Guttmacher AE, for the Core Competency Working Group of the National Coalition for Health Professional Education in Genetics. Recommendations of core competencies in genetics essential for all health professionals. Genetics in Medicine. 2001;3:155-159. 8. Commission on Accreditation for Dietetics Education. CADE Accreditation Handbook. Chicago, IL: American Dietetic Association; 2002. 9. Nicol MJ. The teaching of genetics in New Zealand undergraduate nursing programmes. Nurs Educ Today. 2002;22:401-408. 10. Kirk M. Preparing for the future: The status of genetics education in diploma-level training courses for nurses in the UK. Nurs Educ Today. 1999;19:107115. 11. Erskine J. “Transcription” of genetics to learning modules. DEP-Line. 2002;23:7-8. 12. Greendale K, Pyeritz RE. Empowering primary care health professionals in medical genetics: How soon? How fast? How far? Am J Med Genet. 2001;106:223232. 13. National Human Genome Research Institute. The Human Genome Project: Exploring Our Molecular Selves. Available at: http://www.genome.gov/Pages/ EducationKit. Accessed March 29, 2004. 14. National Cancer Institute. Understanding gene testing. Available at: http://www.accessexcellence.org/ AE/AEPC/NIH. Accessed March 29, 2004.