Abstract
As genomic advances have turned the promise of personalized prevention and health promotion into a concrete possibility in the near future, scholars and the Centers for Disease Control and Prevention have begun to call for U.S. health educators to develop their genomic competencies. This advocacy, however, begs the question whether health educators feel the need for further genomic training. Using an emergent design, the authors analyze qualitative data obtained from in-depth interviews with 24 health educators in the United States. Data are searched for salient, emergent themes (salience is determined by the frequency of a theme’s occurrence across interviews). Findings indicate that although the majority (78.3%) of health educators have received minimal or no genomic education, 81.0% acknowledge the importance of adding some type of training to their future professional development. Participants suggest conference presentations, workshops, and symposia (54.5%) as the most preferable approach for delivering such training. The four most frequently desired training topics include applied genetics/genomics (85.7%), basic genetics/genomics (42.9%), current and future developments in genetics/genomics (28.6%), and genetic testing and screening (19.0%). Findings from this qualitative study can become catalysts for future examinations of this topic and provide the conceptual basis for developing genomics training materials specifically for health educators.
Since the ending of the Human Genome Project (HGP) in 2003, scientists have rapidly advanced existing knowledge regarding humans and their genetic makeup (Birney et al., 2007; The International HapMap Consortium, 2005). Moreover, the HGP and its subsequent discoveries placed the spotlight—previously centered on single genes as the cause of commonly known diseases—beyond the structure and function of a single gene, on to the interactions among various genes, and the interactions among genes and the biological and sociocultural environments. Thus, the former focus, historically referred to as genetics, gave way to a more dynamic and synergistic perspective designated by the term genomics (Chen & Goodson, 2007a). Such advances and change of focus have brought the promise of personalized prevention, health care, and health promotion (treating and preventing common chronic diseases based on particular genetic types) into the realm of possibility for the near future (Feero, Guttmacher, & Collins, 2008).
Although most genomic information and technologies remain in early stages of application to clinical practice and public health (Khoury, 2007), consumers can already find several companies selling specific genetic tests directly to the general public, and providing personalized lifestyle recommendations based on these tests’ results (Hunter, Khoury, & Drazen, 2008; Sanderson et al., 2008). According to Pearson (2008),
Direct-to-consumer genetic testing is a rapidly growing market—the past year has seen the launch of companies, such as Navigenics and 23andMe in California and DeCODEme in Iceland, that offer DNA screening for a range of common genetic variants linked to disease. (p. 570)
Despite potentially promising innovations stemming from genomic developments, the prospect that these new technologies might be exploited for market gains raises a serious question regarding genomics health services delivery: Are health professionals and indeed the general public ready for the dissemination of this kind of personalized prevention? The answer appears to be a resounding “No,” especially if one considers recent findings from a systematic review of the literature published in the Journal of the American Medical Association (Scheuner, Sieverding, & Shekelle, 2008). Synthesizing studies that addressed, among other topics, the challenges in delivering genetic services and meeting consumer needs for genomic information, the authors concluded that professionals “[feel] underprepared for assessing and managing genetic issues in their practice and [lack] basic genetic knowledge” (Scheuner et al., 2008, p. 139). Regarding information needs of consumers, the review also concludes “that genetics knowledge was reported to be low but attitudes were generally positive” among the lay public (Scheuner et al., 2008, p. 1320). Thus, it appears health professionals and the public at large find themselves equally in need of guidance and education regarding genomic health issues.
Specifically for health educators—whose primary professional responsibilities lie in educating the general public about health issues and in reflecting the public’s concerns back to the health care community—genomics education becomes vital. Initiatives to prepare health educators who can deal with genomics-related topics would contribute significantly to these health professionals’ knowledge of genetics as well as to the education of the general public. If health educators are well trained in genomics, they become better positioned to disseminate complex genetic information to lay communities and to design, implement, and evaluate genomics-related health promotion programs (Chen & Goodson, 2007a). In particular, they become better equipped to enact the genomic competencies proffered by the Centers for Disease Control and Prevention (CDC, 2001). These competencies establish that health educators must be able to
1) Translate health related information about social and cultural environments, (including community needs and interests and societal value systems) for use in population-based scientifically sound genomic health education programs; 2) determine the factors such as learning styles, literacy, learning environment, and barriers that influence learning about genomics; 3) differentiate between genomic education and genetic counseling; 4) facilitate genomic education for agency staff, administrators, volunteers, community groups and other interested personnel; 5) utilize social marketing to develop a plan for incorporating genomics into health education services by working with community organizations, genomic experts, and other resource people for support and assistance in program planning; 6) provide a critical analysis of current and future community genomic education needs; and 7) advocate genomic education programs and/or integration of genomic components into education programs.
In reality, although a handful of health educators currently provide genomics-related health promotion to lay communities (Burhansstipanov, Bemis, Dignan, & Dukepoo, 2001; Miller et al., 2005; Wagner-Costalas et al., 2003), most are not ready to incorporate genomic competencies into health promotion. In a prior study, we conducted the first assessment of health educators’ likelihood of adopting genomic competencies into public health in the United States (Chen & Goodson, 2007b). After surveying 1,607 health educators, we found most participants were not aware of the efforts made in the field to promote genomics as a dimension of public health; they also exhibited deficient genomic knowledge and negative attitudes. Only a small number of study participants said they were likely to “practice” public health genomics (Chen, Kwok, & Goodson, 2008). This same sample reported lack of knowledge as their main obstacle to conducting genomics-related health promotion (Chen & Goodson, 2009). Thus, the need to develop genomics-related training programs for this particular group of health professionals has been well established and has gained urgency.
Currently, only a few genomics education programs for public health workers are available (Bodzin et al., 2005). For example, the CDC has contributed to the development of two Web-based genomics training tools to increase public health processionals’ genomics awareness (i.e., http://www.cdc.gov/genomics/training/GPHP/index.htm; accessed October 5, 2009) Nevertheless, until now none of these programs have been tailored specifically toward health educators’ unique professional needs.
Given that public health professionals’ training, competencies, and responsibilities vary, developing efficient educational programs or modules for health educators as a professional group should not be overlooked. For this reason, we conducted the present study to explore in depth the following four questions with a sample of health educators practicing in the United States: (a) Have health educators had any genetics/genomics-related training or education? (b) Do health educators perceive they need genetics/genomics training? (c) Which training delivery methods do health educators prefer? and (d) Which genetics/genomics topics do health educators wish to see addressed in their training?
Method
Qualitative Research Design: Rationale and Researchers’ Biases
According to Bach and Paup (2004), understanding the target audience constitutes the initial step for developing any effective training and education program. Toward this end, the present study sought to understand the genomics training and education needs of U.S. health educators. A qualitative approach and design represented the best choice for this task, given how suitable qualitative research is for exploring new information, for providing detailed or in-depth descriptions of previously unexamined topics, and for studying phenomena within their natural settings and surrounding context(s) (Creswell, 1998).
Our qualitative study used an emergent design, allowing for the refinement of the original questions along the data collection process and for the emergence of analytical themes during data analysis and interpretation (Lincoln & Guba, 1985). Although we chose not to use an a priori theoretical framework, none of the authors approached the study from an atheoretical standpoint. Much of our previous (and concurrent) work relies heavily on theories explaining people’s attitudes toward preventive tests (genetic tests, specifically) and theories describing how new ideas get disseminated among professional groups. Diffusion of Innovations Theory (Rogers, 2003), among others, helps shape our theoretical point of view as we examine issues of health educators’ adoption of genomic competencies.
Furthermore, as researchers who conduct qualitative inquiry, we recognize the role the researcher plays as the instrument of data collection (Lincoln & Guba, 1985) and how our own perceptions, assumptions, and values shape the procedures and the outcomes of our study. To better understand the findings we describe here, it is important to bear in mind we (the authors) are university-based health educators, with eclectic, national, and international educational experiences. We share a strong desire to see health educators take a leading role in educating the public about genomics-related health issues (Chen & Goodson, 2007a). Given the complexities inherent in the development of genetic medicine, it will become paramount that the public has access to professionals who can adequately translate the technical information into everyday language. Yet mere translation of the content generated by genomics research is both insufficient and inadequate, given the need to understand, manage, and help interpret the implications and potential effects this new knowledge might have on people’s lifestyles and health behaviors. Health educators have long been perceived as more than merely translators of health information for the lay public; their roles as facilitators, advocates, and liaisons within the health care system make them the most appropriately trained professionals to deal with genomics-related education.
Data Collection Procedures
Participants
Details of this study’s design and sampling methods have been described elsewhere (Chen & Goodson, 2009). In brief, we initially invited health educators from two university settings (in Texas and Maryland) to volunteer for this study. Later, to maximize variation sampling, we also invited health educators attending five major health promotion conferences sponsored by the CDC, MD Anderson Cancer Center in Texas, the American Public Health Association, the Society for Public Health Education, and the Society of Behavioral Medicine. A snowball technique was used to identify additional participants (Lincoln & Guba, 1985). Our final sample consisted of 24 U.S.-based, practicing health educators.
The Interviews
Approval for this study’s procedures was granted by Texas A&M University’s institutional review board. The study used semi-structured interviews. Questions focused on health educators’ perceptions of their need for training in genomics/genetics and asked, in the following order, (a) Have you ever taken continuing education courses on genetics/genomics? (b) Do you believe you need additional training in genetics/genomics? (c) If so, in which aspects would you like to have additional training? and (d) What would you consider to be the best way of receiving additional training?
Before the interview, participants read and signed a written informed consent form and filled out a short demographic survey, providing information on age, ethnicity, gender, religion, educational level, degree concentration, and current work setting. Participants received a health-related book as a token of our gratitude for their time investment after the interviews. Interviews lasted an average of 67 min, and most (91.7%) were conducted by the first author. Twenty-two of the interviews were conducted in person and two were done via telephone. Field notes were taken during each interview session. All interviews were audiotaped and transcribed.
Data Analysis
Identification of Themes
Interview transcripts were analyzed with the assistance of the software package QSR Nvivo version 7 (QSR International, Doncaster, Victoria, Australia). The software helps researchers visually segment every transcript and attach meaningful codes, or labels, to each unit of text. Once transcripts are read and segmented into smaller chunks, each chunk receives a code or a label (units can receive more than one label). Later, these codes and labels are organized according to similarity or within meaningful patterns, forming broader, larger categories or themes. Themes and their subthemes (or the smaller components of a theme) can then be tracked across respondents and reported in terms of selected characteristics, such as frequency of occurrence, intensity, and even cause-and-effect associations (Boyatzis, 1998).
For the purposes of our study, we limited reporting to the description of the most salient themes and to the frequency distribution of the themes (to assess their prevalence or relative importance) across interviewees. Frequency distribution was determined based on counting whether a theme occurred within a given interview and among how many interviews the theme was mentioned.
Verification
To ensure the trustworthiness of our data collection and analyses (the analogue of data validity in quantitative research), interview transcripts were read and carefully compared to the notes taken during each interview. During data analysis, two coders coded the first seven transcripts together. The coders systematically discussed the coding process to ensure reliability of the process during subsequent coding. The remaining transcripts were then analyzed by a single coder, with the codes checked and confirmed by one of the authors.
Findings
Sample
The demographic profile of our sample is shown in Table 1: 66.7% were female (n = 16) and 87.6% between the ages of 20 and 49. More than half (n = 14) of the sample was Caucasian, three participants were Black or African American, two were Hispanic or Latino, two were Asian or Pacific Islander, two were Alaskan Native or American (Native) Indian, and one respondent claimed mixed ethnicity. Religious affiliation also varied among participants. Most were Christian (n = 17); two reported no religious affiliation; and five respondents represented each of the following religions, respectively: Unitarian, Unitarian/Buddhist, Agnostic, American Indian/Native beliefs, and Muslim. Three of the participants held a bachelor’s degree, 13 held master’s degrees, and 8 had doctoral degrees. Although their degree majors and concentrations varied, all respondents worked in the field of health education and health promotion at the time of the interviews. Specifically, 66% (n = 12) held a health educator position in a college or university as faculty members, four worked in a college or university’s health center, two were employed by a state or county health department, two worked in a community setting, two conducted patient education in community clinic settings, one worked for a nonprofit organization, and one worked in the K-12 school system.
Demographic Profile of 24 Health Educators Participating in the In-Depth Interviews Regarding Their Genetics/Genomics Training and Education Needs
M ± SD = 37.3 ± 2.4 years (range = 24-66).
Major Themes
We present the major themes emerging from the interviews below organized by frequency of response across participants (i.e., most frequently mentioned themes are presented first). Because participants used the terms genetics and genomics interchangeably in their interviews, we allow the presentation of themes to reflect this reality.
Previous Training and Education in Genetics/Genomics
When asking health educators in our sample about any prior training or education in genetics or genomics, most (78.3%) said they had received minimal or no preparation. Only a small proportion (n = 5) had extensive training in traditional Mendelian genetics obtained in courses offered by their major training programs (i.e., biology or medical school). Even fewer participants had studied/nontraditional genetics (i.e., genomics) motivated by their job requirements. For example, one interviewee mentioned that despite little training in college, she was asked to conduct genomics education for American Indian communities. This need led her to learn about genomics on her own, with the assistance of her peers.
Perceived Need for Genetics/Genomics Training and Education
We asked health educators whether they felt the need for further training regarding genetics/genomics issues, in light of their previous educational experiences. Even though the majority (81.0%) of our interviewees acknowledged the importance of adding some type of genetics/genomics training to their professional development, a few stated they did not need additional training, and some were uncertain. Those who believed additional training was unnecessary felt the topic of genetics/genomics did not immediately affect their daily professional tasks, even when they saw the topic as potentially important for the future of health promotion efforts. As one respondent remarked,
That particular area [genetics/genomics] does not affect what I do in my job, at least right now. Now, two or three generations down the line, those health educators may have to know more about genetics than I do, because it may be much more common, and there may be issues associated with it that we don’t have now, but right now, for me, I just, it is not an issue that impacts me. (male, Caucasian, Christian, university health care setting)
Nevertheless, the majority of our sample believed understanding genetics/genomics was important for their professional roles as health educators, as explained by this interviewee:
Anything that is going to give you a new outlook on how to approach a public health issue, I think is very interesting, and if new genetic research is truly becoming something big, I really feel that it would only benefit me and anybody in the health profession to learn more about it instead of just the physicians. I think that anyone who is connected to the health field at all would benefit.
OK, so, you are interested in that even though genetics is not related to your job right now?
Right, I mean, right now I am dealing with 18-25 [year-olds], and I don’t know how we will use it, but I would definitely be interested in learning about it if I had a chance. (female, Caucasian, Christian, university health care setting)
Preferred Delivery Method for Genetics/Genomics Training and Education
Participants in our sample had many suggestions for delivering genetics/genomics training to health educators. The most frequently mentioned venues comprised professional conference presentations, workshops, and symposia (mentioned by more than half of the sample, 54.5%). Web-based education (mentioned by 45.5% of the sample) was the second preferred approach. Interviewees also suggested using peer-reviewed journals (36.4%) as another effective form of training (providing CE credits, for instance).
Other methods included in-service training (18.2%), continuing education or college courses (18.2%), satellite or teleconferences (13.6%), books (13.6%), articles in public magazines (4.5%), TV (4.5%), free CDs (4.5%), and interpersonal communication (e.g., 4.5% said they preferred talking to colleagues who are experts in genetics/genomics and health promotion and learn about the topic from them).
Desired Topic
Applied genetics/genomics
Most health educators (85.7%) mentioned applied genetics/genomics as the topic they would prefer to see addressed in future training efforts. This topic embraced two main foci: how to link genetics/genomics to public health or health education and how to connect genetics/genomics to routine professional tasks. One health educator employed at a university setting, for instance, stated her preference this way:
I would like training on what we could do in health education and what we can do with genetic information. So, I would like to start at the very beginning, I guess . . . what can we do as health educators about genetics other than just assess the person, and say, “Oh, you have a family history of this.” What else can we do? That is what I want to know (male, Caucasian, Christian, college or university setting).
It became clear in our interviews that respondents’ work settings, job duties, and research interests shaped their interpretation and views of the term applied. Each interviewee could—from the perspective of his or her current professional role—envision specific potential venues for incorporating genomics information into daily work; they needed help, however, in conceptualizing the application, learning how to apply the knowledge. For example, one respondent who worked for a national nonprofit group targeting injury prevention among children pointed out that a topic of interest would be whether and how genetic differences between genders could explain the disproportionately higher incidence of accidents among boys. Another Hispanic health educator who served in a community health clinic, talked about the urgency in knowing sufficient applied, health-related genetics/genomics material so she could adequately answer patients’ questions. Another participant whose research centers on the topic of minority health mentioned he would like to learn whether unequal disease burden among different racial/ethnic groups had any biological bases and, if so, what were the underlying mechanisms.
Besides learning how to apply genetics/genomics topics to the circumstances they deal with, on a daily basis, participants also wished to learn how to translate genetics information to the lay public, how to better communicate the notion of genetic risk, and how to relay “bad news” regarding genetic outcomes (for instance, results from genetic testing). One participant expressed this as follows:
I’d like to see [health educators] have a course in genetic counseling, and delivering bad news to parents, delivering bad news to people, sort of real hands on strategies for that . . . (female, Caucasian, Catholic, national nonprofit organization)
Basic genetics/genomics
Approximately 40% (n = 9) of our sample expressed some interest in learning basic genetics/genomics concepts:
I think genetics in general [as a topic of training]. . . . I mean, I do not actually have a science background, and so basic genetics 101 would also be useful. So just understanding genetics in general would be good knowledge as well. (female, Caucasian, Unitarian, community setting)
This group was equally split between those who merely identified “basic genetics” as useful knowledge (n = 5) and those who identified specific basic topics they wished to learn about (n = 4). The specific topics related to basic, nonapplied knowledge mentioned by participants included history of genomics, genetic translation and expression, cloning, and genetic disorders.
Current and future developments in genetics/genomics
Nearly 30% of the health educators we interviewed (28.6%) said they would like to be informed of current and future developments in genomics. Interviewees mentioned they would like to see more information on currently available genetic research as well as currently available genetic technologies. They would also like to learn about the discoveries and research that are likely to occur in the near future.
Genetic testing and screening
Nineteen percent of interviewees mentioned genetic testing/screening as an important topic for any genetics/genomics educational program. In particular, they were eager to know about the status of currently available methods for conducting genetic testing and screening, vis-a-vis the lavish promises made in the lay media, such as “a drop of blood can test your diseases.”
Ethical, legal, and social implications (ELSI) of genomics
A few participants (19.0%) mentioned they desired to be educated about the ELSI of the “new genetics” (Chen & Goodson, 2007a). One of these participants expressed her interest this way:
I would also like training in advocacy . . . specifically tailored, you know, advocacy for patients, advocacy for groups who are affected by, you know, their genetic disorder of interest.
So, such as cystic fibrosis?
Yeah, yeah, I mean, actual exposure to people with the disorder. You know, finding out what are the needs in the different communities, and learning how to advocate from that standpoint . . . but you are also going to need, I guess to work on introducing things like the ethics of the situation. . . . We need policy classes . . . we need organizational classes. Um, we need micro-practice and macro-practice classes. So, you know macro being more policy or organizational versus micro, which would be individual and small groups . . . ethics is going to be huge, because I consider, you know, that to be work with vulnerable populations . . . the ethics of working with those groups and social awareness. (female, African American, Unitarian/Buddhist, college or university setting)
Two other participants mentioned the importance of knowing the regulations and laws governing the access to, and use of, genetic information besides learning about ethical guidelines.
Other specific topics
In addition to the main topics identified above, one respondent expressed a personal interest in the following specific genetics/genomics topics: (a) the economic aspects of conducting genetics/genomics research and (b) the chronic effects on human genes and of chemical and biological hazards, including potential outcomes from bioterrorism.
Discussion
The absence of genomics training in our sample’s professional background did not surprise us, given the reality that only 15% of accredited U.S. public health schools and programs have genomics listed among their core courses (Shortell, Weist, Sow, Foster, & Tahir, 2004). Moreover, in a nationwide survey we conducted with health educators, 71.4% said they had never been exposed to genomics-related education (Chen & Goodson, 2007b).
What did in fact surprise was the disinterest we witnessed, among 20% of participants, in receiving additional genomics training because they did not see how genomics-related information or technologies could affect their current jobs. This attitude signals potential dangers. Uninformed health educators can, out of sheer ignorance, contribute to disseminating negative views of genetic/genomic developments. These untrained professionals can also potentially reinforce—among the populations with whom they work—many misconceptions, false beliefs, and problematic values, associated with genetic/genomic prevention efforts, thus boycotting an innovation that can have promising benefits (Chen & Goodson, 2007a; Khoury, Burke, & Thomson, 2000).
The greater part of our sample did, however, believe in the importance of receiving additional training and stressed, quite positively, that the best education programs would teach them to apply genomic information to the specific tasks they carry out in their daily jobs. Given the applied nature of health education as a field, it made sense that participants in our study preferred applied genetics/genomics as a training topic over learning basic concepts. Moreover, our findings lend support to the argument proposed by Joseph D. McInerney (2008), executive director of the National Coalition for Health Professional Education in Genetics, that genomics training for health professionals must fit their professional competencies and practice in order to help them “think genomically.”
But despite the reasonable argument and the data available to support it, no educational efforts specifically targeted at health educators have been made: Although currently there are two Web-based training sites for public health workers, neither of them addresses specific health education needs. Given that the various public health professional groups (e.g., health educators, epidemiologists, environmental scientists, health administrators) vary nontrivially in their mission and goals, developing a one-size-fits-all curriculum to educate all public health workers is inappropriate. As the former director of the Human Genome Project (Francis Collins) and his colleagues remind us, “Health professionals vary, both individually and by discipline, in the amount and type of genomics education they require. So, multiple models of effective genomics-related education are needed” (Collins, Green, Guttmacher, & Guyer, 2003, p. 841).
Nevertheless, it is also important that future training programs for health educators contain elements of basic genetics knowledge as well as topics related to the ELSI of genomic developments. Again, the amount and specific type of basic information required by health educators must be determined, and programs should be tailored to that need. It is essential to bear in mind however that basic knowledge can help prevent potential misuse (or abuse) of genetic information and technologies, and training regarding its ELSI dimensions can help curb disparities in access to, and delivery of, genomic services. In tandem with the applied aspects of genomics education, basic knowledge and ELSI issues address most of the practical concerns health educators should be exposed to in future genomics training efforts.
Finally, we should point out that despite the contributions this study makes, its design suffers from an important limitation—that of a small sample size. Our sample of 24 health educators may not have captured all possible variations in points of view, but it is important to bear in mind that despite the small sample size, data saturation was in fact reached during analysis—a sign that potential additions to the sample may not necessarily have generated any new themes or ideas. Unfortunately, such a small sample did not allow for a systematic examination of themes across different groups of respondents. For instance, it might well be a fact that younger, more recently trained health educators have different training needs than seasoned, more senior professionals. Moreover, although our sample included health educators working in diverse settings (i.e., college or university, college or university student health center, state/county health department, community setting, community health clinic, nonprofit organization, and K-12 schools), we did not have equal numbers of participants in each work setting and did not include a comprehensive spectrum of work settings in which health educators practice. Because of its small size, however, segmenting our sample into groups according to time in the field would have yielded very small ns for each group, rendering the analysis potentially useless.
Nonetheless, the findings emerging from this study can become catalysts for future examinations of this topic and provide the conceptual basis for developing genomics training materials specifically for health educators. For example, future researchers could focus on developing a survey, based on the qualitative data presented here, to examine health educators’ desire to learn about genetics/genomics, to determine genetics/genomics training needs and education topics, and to identify cost-effective genetics/genomics training and education methods. Moreover, future genomics training materials should be tailored specifically toward health educators’ needs. Health educators in our sample identified professional conferences as the most desirable delivery method for genetics/genomics training and education. Leading health education professional associations, such as the American Association for Health Education, the American School Health Association, and the Society for Public Health Education, should provide continuing education opportunities for health educators to receive genetics/genomics-related training in the formats that best meet these professionals’ training needs.
Footnotes
Authors’ Note:
This study was funded by various agencies, including the American Association of Health Education/Will Rogers Institute Fellowship, the Society of Behavioral Medicine’s Distinguished Student Award (excellence in research), graduate student research grants from the Department of Health and Kinesiology at Texas A&M University, and the University of North Florida 2008 summer scholarship grant to Dr. Lei-Shih Chen. We also acknowledge the support from Dr. Patricia Goodson’s Program to Enhance Scholarly and Creative Activities Grant at Texas A&M University.