Communications Research in Using Genomics for Health Promotion
Summary and Keywords
It was expected that personalized risk information generated by genetic discovery would motivate risk-reducing behaviors. However, though research in this field is relatively limited, most studies have found no evidence of strong negative nor positive psychological or behavioral influences of providing genetic information to improve individual health behaviors. As noted by systematic reviews and agenda-setting commentaries, these null findings may be due to numerous weaknesses in the research approaches taken to date. These include issues related to study samples and design, as well as the motivational potency of risk communications. Moreover, agenda-setting commentaries have suggested areas for improvement, calling for expanded consideration of health outcomes beyond health behaviors to include information exchange and information-seeking outcomes and to consider these influences at the interpersonal and population levels.
A new generation of research is adopting these recommendations. For example, there is a growing number of studies that are using communication theory to inform the selection of potential moderating factors and their effects on outcomes in understanding interpersonal effects of shared genetic risk. Researchers are taking advantage of natural social experiments to assess the general public’s understanding of genetics and inform approaches to improve their facility with the information. Additionally, there are examples of risk communication approaches addressing the complexity of genetic and environmental contributors to health outcomes. Although the pace of this translation research continues to lag behind genetic discovery research, there are numerous opportunities for future communications research to consider how emerging genomic discovery might be applied in the context of health promotion and disease prevention.
The purported value of genomic discovery for health promotion and disease prevention was expected to be in generating personalized information that could be communicated to individuals to motivate them to adopt risk-reducing behaviors (Green & Guyer, 2011). These positive expectations also were extended to health care providers who were expected to benefit from using this information in clinical decision making (Green & Guyer, 2011). Personalized risk estimates were anticipated to enhance providers’ ability to counsel patients about appropriate risk-reducing actions. Accordingly, much of the research on translation of genetic discoveries for health promotion has focused on risk communication and its psychological impact on motivation for risk-reducing behavior changes (e.g., uptake of cancer screening, tobacco cessation, dietary changes) and related health service impacts (e.g., health care provider referrals and discussions).
Communication research relating to genomic applications (e.g., genetic tests and risk estimates) has occurred in a time of rapid advancement in technology and been tied closely to these innovations (McBride, Abrams, & Koehly, 2015). In the last two decades, genes involved in hereditary cancer and cardiovascular syndromes were characterized, alongside numerous iterations of innovation in genome analytic technologies. For example, the ability to analyze the precise order of elemental bases (As, Cs, Ts, and Gs) in large genomes (i.e., high throughput sequencing) has enabled rapid DNA analysis that can be derived from readily accessible biospecimens (e.g., saliva samples). In turn, this capability has broadened the reach of genetic testing outside of clinical and research settings and obviated the involvement of health care providers. Moreover, this technology has greatly increased the affordability of whole genome sequencing (WGS) and whole exome sequencing (WES) for health care delivery systems and individual consumers. Indeed, innovations continue to emerge, shape, and expand our notions of genomic information and contexts for access (e.g., direct to consumers (DTC) and eHealth), arguably accentuating the importance of related communication research.
For clarification, in this article we will consistently use several terms: genetic testing, genomics, communication, health behaviors, and translation research. Genetic testing in this article refers to tests for genetic variation or mutations (single or so-called multiplex tests and eventually WGS) that give information about an individual’s propensity to develop a health condition. Genomics refers to information concerning interrelationships of genes with other genes, and with the environment (including health behaviors) that together influence health outcomes. Communication refers to the broad spectrum of risk messages and delivery approaches (e.g., print, public discourse, Internet, telephone) in which genomic information, broadly defined, can be conveyed. Health behaviors are lifestyle habits (e.g., tobacco use, eating, and physical activity patterns) and health care seeking (e.g., screening for early detection of health conditions). Translation research refers to research aimed to transfer “basic science discoveries (bench) into clinical applications (bedside), prevention, and public health interventions (trench)” and, in turn, to transfer knowledge “about effective interventions of all types into successful policy and program initiatives across multiple levels of the health care system and society” (Best, Hiatt, & Norman, 2008).
In this article, we will first provide a historical overview of three streams of influence that have shaped communication research related to genomics beginning with the discovery of genes involved in hereditary cancers in the mid-1990s. We will then discuss widely noted limitations and knowledge gaps identified by reviews and commentaries, and highlight emerging research that aims to fill these gaps.
Streams of Influence on Research in Communication of Genomic Information
The field of genomic communication research is relatively young, spanning just a few decades. In this time, three streams of influence have shaped research priorities: discovery of single genes associated with high risk for preventable health conditions in select populations; rapid advances in genome technology that have enabled genomic applications to reach the general population; and publication of evidence reviews and research agenda-setting commentaries outlining priorities for the field. Each will be described and its impact on genomic translation for health promotion and disease prevention in the section to follow.
Discovery of High-Risk Genes in Select Populations
The characterization of several rare and highly predictive genetic mutations associated with preventable health conditions, such as those underlying hereditary cancer syndromes, became the context for many of the early studies of genomic communication and health promotion. Genomic information related to mutations in single genes aligned with quantifiable Mendelian patterns of inheritance; individuals (and their blood relatives) carrying specific mutations were found to be at substantially higher risk for diseases such as cancer. Accordingly, the related communications and research primarily evaluated information provided to individuals regarding test results for the presence or absence of a mutation known to greatly increase the lifetime risk of these conditions (Hadley et al., 2004; Hay et al., 2007; McBride, Koehly, Sanderson, & Kaphingst, 2010; Tercyak, O’Neill, Roter, & McBride, 2012).
The majority of this work evaluated the experiences of individuals at risk of hereditary breast and ovarian cancer undergoing genetic testing for mutations in the BRCA1/2 genes. These genes are associated with elevated risks for breast (BRCA1: 44%–78% risk; BRCA2: 31%–56% risk), and ovarian (BRCA1: 18%–54% risk; BRCA2: 2.4%–19% risk) cancers (Antoniou et al., 2003), as well as pancreatic and prostate cancers (Breast Cancer Linkage Consortium, 1999; Thompson & Easton, 2002). Similar research examined the experiences of individuals undergoing genetic testing for hereditary nonpolyposis colorectal cancer (HNPCC or Lynch syndrome; Hadley et al., 2004) to identify mutations in one of the DNA mismatch repair (MMR) genes including MLH1, MSH2, MSH6, and PMS2. Individuals with HNPCC have up to a 70% lifetime risk of developing colorectal cancer, and elevated risks for endometrial, ovarian, stomach, small intestine, upper urinary tract, and pancreatic cancers (Bonadona et al., 2011; Dunlop et al., 1997; Kastrinos et al., 2009). Additionally, evidence supporting pathogenic, extremely rare mutations in CDKN2A, or p16, conferring 30%–75% risk of melanoma (Begg et al., 2005) also enabled identification of families at high risk for melanoma where sun protection behaviors would be especially important.
Research priorities for these communication studies were informed by safety and ethical concerns, specifically, concerns about potential harms of genetic testing and feedback of test results. Consequently, individuals’ psychological and behavioral responses to the receipt of genetic test results were largely the focus. This research emphasized negative psychological responses and the supposed impact that these emotions would have on motivating behavioral responses to reduce disease risk. Indeed, most of these studies anticipated high levels of distress as reflected in the consistent use of the Impact of Event scale (Horowitz, Wilner, & Alvarez, 1979), a measure developed to evaluate post-traumatic distress.
Reviews of this literature demonstrated that most individuals experienced minimal or no negative emotional responses to genetic testing for hereditary cancer syndromes (Butow, Lobb, Meiser, Barratt, & Tucker, 2003; Hamilton, Lobel, & Moyer, 2009; Heshka, Palleschi, Howley, Wilson, & Wells, 2008; Meiser et al., 2006; Schlich-Bakker, ten Kroode, & Ausems, 2006). For instance, a meta-analysis of 20 studies concluded that although individuals who learned that they were carriers of pathogenic BRCA1/2 mutations experienced an increase in general anxiety and cancer-specific distress, such elevated distress was short lived (Hamilton et al., 2009). Results also showed increases in the adoption of recommended cancer screening behaviors and in the use of risk-reducing surgery among BRCA1/2 and HNPCC-related mutation carriers (Burton, Hovick, & Peterson, 2012; Heshka et al., 2008; Julian-Reynier et al., 2011; O’Neill, Valdimarsdottir, et al., 2010; Schwartz et al., 2012). Examinations of testing interest and uptake, as well as behavioral and psychosocial outcomes of p16 testing in families at high risk for melanoma, have had mixed findings. High-risk family members without a melanoma history receiving feedback that they were p16 carriers have reported increases in skin self-examination frequency and quality (more body sites examined), after receipt of test findings over the subsequent two years (Aspinwall, Leaf, Dola, Kohlmann, & Leachman, 2008; Aspinwall, Taber, Leaf, Kohlmann, & Leachman, 2013). Sun protection behaviors have not shown the same improvement (Glanz et al., 2013; Kasparian, Meiser, Butow, Simpson, & Mann, 2009) however, and may be in part because sun protection is already quite consistent among these high-risk families.
Critiques of this research noted that most studies occurred in highly controlled research and clinical settings and involved intensive pre-test and post-test education and counseling conducted by certified genetic counselors (McBride et al., 2010). These approaches were found to be effective (Hilgart, Hayward, Coles, & Iredale, 2012). However, the resource demands of face-to-face genetic counseling and the limited number of certified genetic counselors to carry out the services were argued to reduce the feasibility for implementation in many public health contexts (Cohen et al., 2012; Robson et al., 2015). Furthermore, these studies involved self-selected, highly motivated individuals from high-risk families who were well-educated and largely White. These limitations were viewed to limit the generalizability of findings to more diverse populations (Graves, Sinicrope, et al., 2014; McBride et al., 2010).
Technology Expansion Enabling Translation Research in the General Population
New high throughput analysis methods paved the way for genome wide association studies (GWAS) or large explorations of associations of individual genetic variants with common health conditions. These studies identified single nucleotide polymorphisms (SNPs) that were far more common than the cancer-related mutations, and were associated with substantially lower levels of risk (associated with 10%–30% increased risk of disease). It became commonplace and remains so today to group these SNPs as “multiplex genetic tests.” These tests are accessible through medical providers or can be purchased in a DTC model. This presented the opportunity to provide a broader description of risk that included multiple risk indicators for a single or multiple diseases. This innovation also presented challenges by increasing the complexity of risk information and the potential for competing risk stories (e.g., expanding opportunities for pleiotropy in which SNPs associated with heightened risk for one health condition lowered risk for another). However, simultaneously, these genetic variants were criticized for potentially oversimplifying the characterization of risk for common chronic diseases such as Type 2 diabetes and heart disease.
Several studies began examining whether providing such genetic susceptibility test results increased motivation to adopt health protective behaviors such as smoking cessation. For example, one study examined comprehension, motivation for, interpretation, and uptake of genetic susceptibility testing for lung cancer risk. Individually customized printed communications were provided to African American patients who smoked and received care in a community clinic. Those at highest risk were those who were missing both copies of a gene involved in detoxifying carcinogens in tobacco smoke. Those in the highest risk category received feedback indicating a relatively modest increase in risk (about 20%) above those who had at least one copy of the gene. There was no difference in cessation rates among those who received the higher risk feedback compared to those who received the lower risk feedback (McBride et al., 2002). However, it was duly noted that smokers recruited to the study were all highly motivated to quit and all received evidence-based assistance with smoking cessation including pharmacotherapy.
Concerns again were that this SNP-based risk information could have negative influences such as heightened general distress and worry about illness, result in over- or inappropriate use of health services (such as screening or physician visits), or insurance discrimination. These feared negative outcomes largely were not borne out (Graves, Hay, & O’Neill, 2014; McBride et al., 2010). An additional concern raised regarding potential negative effects of this feedback was that those deemed not to be at increased risk would become less motivated to avoid risky behaviors (Graves et al., 2014; McBride, Birmingham, & Kinney, 2015). Although research is limited, to date studies have not supported this concern. For example, communicating the concept that one gene can influence separate health conditions differently (i.e., pleiotropy), has been shown in the case of coronary artery disease risk and Alzheimer’s disease to increase distress levels and strategies to reduce risk (Christensen et al., 2016).
Publication of Evidence Reviews and Agenda-Setting Commentaries
The relative lack of negative outcomes in providing genetic risk feedback for common diseases in individual studies was welcome news to advocates of such testing. However, systematic evidence reviews also showed that genetic risk feedback did not consistently increase the likelihood of health behavior change in domains including diet, physical activity, smoking cessation, and alcohol use (Cheera, Klarich, & Hong, 2016; Hollands et al., 2016; Li, Ye, Whelan, & Truby, 2016; Marteau et al., 2010).
Numerous limitations also were noted with respect to the studies included in these evidence reviews. For example, as noted above, these studies included small self-referred samples with high preexisting motivation to change the target behavior. Moreover, the relatively small increases in risk conveyed by the single gene variants was not considered especially motivational particularly for influencing addictive behaviors such as tobacco use.
Prompted in part by concerns about the slower pace of translational research compared to basic science and discovery in genomics (Schully, Benedicto, Gillanders, Wang, & Khoury, 2011), a number of consensus conferences and related summary documents also were published on translation and communication research priorities over the past decade (Graves et al., 2014; McBride, Abrams, & Koehly, 2015; Tercyak et al., 2012; Wang, Bowen, & Kardia, 2005). These agenda-setting commentaries raised questions about the research priority to evaluate the benefit of genomic information for motivating behavior change. Commentaries invoked existing health behavior theories and conceptual models of behavior change to question the logic that communication based on small increases in risk would alone produce behavior change. Instead, commentaries advised a deeper consideration of communication theories and new conceptualizations of outcomes. It was noted that most commonly assessed communication-related outcomes such as awareness and comprehension were fairly superficial. Assessment of outcomes with the potential to be informative for intervention design was advised (e.g., information processing, acceptance of information).
In sum, the evidence reviews and commentaries called into question the utility of genetic risk feedback for motivating meaningful health behavior change. However, these reviews also have been over-interpreted to suggest that going forward, genomic risk communications will add no value to current health promotion interventions. Counterarguments have pointed to the numerous noted weaknesses of the prior research and that ongoing research deserves consideration as genomic discovery continues and public expectations have been raised about the potential health benefits to be derived. In the section to follow, three areas of weakness in the prior research to apply genomic information for health promotion are discussed: low external validity, overemphasis on behavior change outcomes, and limited internal validity. Related and cross-cutting in these concerns is the call to consider the unique aspects of genomic information that could improve health promotion interventions.
Limitations of Genomic Risk Communication Research
Low External Validity
The most consistently noted limitation of genomic communication research has been the preponderance of study samples in which White, highly educated participants are overrepresented. Initially, this was attributed to the limited offering of these tests in high-risk clinics located largely in cancer centers and other specialty clinics. Additionally, in these high-risk settings, racial/ethnic minorities have been consistently less likely to pursue genetic counseling and testing (Hall et al., 2011), despite evidence that these groups held generally positive attitudes about the use of genetic information to improve health outcomes (Sterling, Henderson, & Corbie-Smith, 2006).
Efforts to broaden reach by conducting studies in primary care settings have had similar limitations. For example, Hall and colleagues (Hall et al., 2012) offered risk information (based on gene-environment feedback) for colorectal cancer risk. While test interest and uptake was high, African Americans were less likely to agree to testing than White participants. Indeed, race was a stronger predictor of uptake than colorectal cancer risk perceptions. Similar findings were reported by Graves and colleagues (Graves et al., 2013). More recently, Pasick and colleagues (Pasick et al., 2016) have partnered with a state breast and cervical cancer services call-in line (Every Woman Counts) to offer brief family history screening. With considerable qualitative exploratory work to understand the needs of these women prior to launching the screening, the research team was able to equalize screening reach across racial/ethnic groups.
The advent of direct-to-consumer (DTC) testing was expected to attract more heterogeneous study samples due to its reach outside of specialty clinical settings. Yet, even in this context, published research on DTC uptake consistently has shown that those who participated in research and sought testing were more likely to be White, well-educated, and have health insurance (Bloss, Schork, & Topol, 2011; Hensley Alford et al., 2011). There has been considerable discussion in the agenda-setting reviews regarding the need to adopt community-based participatory methods to broaden target group engagement and understand information needs of hard-to-reach audiences. Yet, to date much of this research has included relatively small qualitative studies (McGrath & Edwards, 2009). Thus, the majority of what we know about effective communication of genomic information reflects the experiences of a homogeneous and self-selected group of early adopters.
Another challenge for the field has been the preponderance of highly motivated participants in studies of genomic risk communication and behavior change. The majority of this research has been conducted in the context of tobacco cessation. The overrepresentation of motivated smokers has been attributed to genomic communications being evaluated as part of cessation interventions (Sanderson et al., 2009). However, proactive attempts to recruit less motivated individuals (by expressly stating that individuals would not be asked to change behaviors) did not succeed in recruiting the individuals with low motivation for behavior change (Sanderson et al., 2009). A survey of African American students attending a historically Black college found that tobacco users with a low desire to quit were most interested in undergoing testing if they thought they might be at higher risk (McBride, Lipkus, Jolly, & Lyna, 2005). Moreover, college-age smokers with lower levels of motivation to quit were most interested in genetic information due to its novelty and less drawn to its implications for their health (O’Neill et al., 2013). It may be that those who desire to change health behaviors but have been unable to succeed are drawn by the novelty of genetic information (O’Neill, McBride, Alford, & Kaphingst, 2010).
Lastly, the rapid pace of genetic discovery has led some researchers to use hypothetical scenarios in which individuals are asked to consider a test under development to gauge their interest in genomic risk information and its likelihood of enhancing motivation (Persky, Kaphingst, Condit, & McBride, 2007). The concern is that basing estimates of uptake or behavioral responses on participants’ consideration of hypothetical tests may have limited external validity. Frequently, results of these studies have suggested that uptake of testing would be much higher than actual uptake has been, and that results were expected to be much more motivational than they have shown.
A few studies have incorporated experimental methods with hypothetical scenarios to engage target audiences (e.g., health care providers or consumers) to consider their use of new genomic information. These studies used interactive exercises embedded in surveys to test responses to new information and their association with individual characteristics (Abrams, McBride, Hooker, Cappella, & Koehly, 2015; White, Bonham, Jenkins, Stevens, & McBride, 2008). In these cases, authors commented on results being counterintuitive to widely held concerns and suggested much more nuanced outcomes. For example, White and colleagues found that health care providers’ reported generally low facility with applying new clinical guidelines based on genomic discovery. This lack of confidence may have interrupted racial disparities in care delivery; when presented with a Black versus White patient who had concerns about breast cancer risk, family physicians were equally likely to inappropriately refer the woman for genetic counseling (White et al., 2008).
Overemphasis on Behavioral Outcomes
Prior agenda-setting commentaries also have pointed to the limitations of the focus on behavior change and related conceptual models used in prior research. For the most part, perceived risk was posited to be the primary mechanism through which genomic information was expected to influence behavioral outcomes. The supposition was that the highly personalized nature of genetic risk information would greatly increase the salience of related risk taking and motivate behavior change. These proposed associations derive from well-established health behavior theories (e.g., Health Belief Model, Theory of Planned Behavior; Conner & Norman, 2005). Yet, risk perceptions and other theoretical mediators of behavior change have not consistently been activated by genomic risk communications. Some of this has been attributed to participants reporting high levels of motivation to change behaviors prior to receiving genetic risk information. These ceiling effects may account for null outcomes. However, even in cases where participants experienced increases in risk perception, consistent with other contexts, risk perceptions have been shown to be inconsistent predictors of behavioral adoption (Sheeran, Harris, & Epton, 2014).
Another noted weakness of the research was that most of the studies conceptualized genetic test results to have influence on behavioral outcomes via negative psychological processes—such as cancer worry or traumatic stress (McBride et al., 2010). Indeed, much of the early literature related to information about hereditary cancer syndromes was based on stress and coping models where receiving a high-risk result was predicted to produce worry and other negative affect that would motivate behavior change. The consistent findings that genetic risk feedback produced little enduring negative affect also likely contributed to the lack of motivational impact on behavioral outcomes. Additionally, the reliance on indicators of post-traumatic distress to assess psychological impact may have influenced null findings (e.g., Dorval et al., 2006).
The majority of studies have relied on conceptual models of behavior change (e.g., smoking cessation, physical activity adoption, screening). Theories drawn from the health communication tradition, specifically, have been underutilized in understanding mechanistic questions regarding the behavioral and communicative utility of genetic risk information (e.g., acceptance of information). A few studies have used information processing models to choose predictors and outcomes such as perceived relevance of the information and confidence to seek information and outcomes such as amount of information read (Kaphingst et al., 2012; McBride et al., 2009).
Instances in which communication models have been applied to influence participants’ responses to risk information provide more nuanced findings. For example, the Common-Sense Model was used (Cameron, Marteau, Brown, Klein, & Sherman, 2012) to consider an individual’s common-sense understanding of how genes, physiology, and health habits work together to influence risk (these if-then links are termed “coherence”). Messages that included, versus did not include, Risk-Action Link Information (describing how a low-fat diet reduces colon cancer risk given genetic results indicating presence of a gene fault) enhanced response efficacy (beliefs that low-fat diets effectively reduce risk) and lowered anticipated threat of colon cancer given positive results. Particularly at high levels of genetic risk, coherence information reduced discouragement about the value of attempting protective behavior (genetic fatalism), and motivated anticipated protective action. These approaches suggest avenues for risk communication themes that could be evaluated for improving health promotion interventions.
Intervention approaches including genetic risk information also have been grounded largely in individual level social cognitive theory. However, the conceptual underpinnings that guided study designs were rarely described in the narratives, giving the impression that these studies were atheoretical. Theory also was not used consistently to support the choice of moderators or stratification variables considered as predictors of behavioral or communication outcomes. For example, moderators supported by communication theories include but are not limited to health literacy or numeracy (Lea, Kaphingst, Bowen, Lipkus, & Hadley, 2011), and style of information seeking or propensities to information avoidance (Lipkus, McBride, Pollak, Lyna, & Bepler, 2004).
With few exceptions, mechanisms were conceptualized solely at the level of the individual. Yet one of the ways in which genomic information differs from other risk information is that it has a shared threat component. Only a few researchers have explored mechanisms such as communal coping, derived from Interdependence theory (Lewis et al., 2006), and focused on strategies within kinship groups relating to support, risk awareness, and behavior change (Ersig, Hadley, & Koehly, 2011; Koehly et al., 2008).
There has been a surprising dearth of conceptual frameworks relating to mass communication. Some have suggested (Street, Thompson, Dorsey, Miller, & Parrott, 2003) diffusion of innovation frameworks and the multiple levels or ecology in which health communication channels operate—individual, physician/patient, mass media, cultural, and political-legal contexts. In these frameworks, genetic and genomic information (general and individualized information) is posited to travel through diverse channels and influences. Yet there are no examples to date of these multilevel frameworks being applied in the context of using genetic information to influence health promotion.
Limited Internal Validity
Limitations of prior research also have been noted relating to studies being designed to evaluate behavioral outcomes based on participant self-report (e.g., smoking cessation, increase of physical activity, or dietary changes). This emphasis has influenced the timing of follow-up assessments and outcome measures commonly used by investigators. Coincidently, agenda-setting reviews have pointed to gaps in public understanding of and facility with genomics and suggested the need to give greater emphasis to study designs amenable to assessment of communication outcomes (Hurle et al., 2013; Lea et al., 2011). For example, studies evaluating behavior change outcomes typically administer behavioral assessments at 3, 6, and 12-month follow-ups. However, when considering and assessing communication outcomes, shorter and more frequent time frames might be required. Moreover, study designs have yet to use real-time data collection enabled by the public’s use of the Internet and social media. Such approaches could provide insight into these issues and enhance the reliability of self-report.
An additional limitation of past research is the predominant focus on the experiences of the individual who received genetic risk feedback. Given that communication is an inherently interpersonal process, most agenda setting has pointed to the importance of capturing the experiences of the partner(s) (e.g., family member, physician, genetic counselor) with whom this information is shared. Some suggestions for this research have been to use novel measurement and methodological approaches to examine interpersonal genomic communication that occurs between individuals, families, and health care providers. For example, dyadic study designs and data analysis techniques (e.g., the Actor-Partner Interdependence Model; Kenny, Kashy, & Cook, 2006; Kenny & Ledermann, 2010) could provide new insight into the process and outcomes of interpersonal genomic risk communication.
Innovative study designs informed by the Multiphase Optimization Strategy (MOST; Collins, Nahum-Shani, & Almirall, 2014) and factorial experimental designs (Collins, Dziak, Kugler, & Trail, 2014), allow for the optimization and evaluation of behavioral intervention components in a highly efficient manner. These approaches could allow researchers to rigorously test different methods for incorporating genomic information into risk communications or existing behavior change interventions. For example, an ongoing study by Wang and colleagues (Wang et al., 2014) is using a 2x2 factorial design to examine the effects of providing genetic risk information for obesity, alone or in combination with lifestyle risk information, on individuals’ psychological responses, behavioral intentions, health behaviors, and body weight. Future investigations could extend such study designs to answer novel questions, such as whether genomic risk information can be effective in motivating behavioral changes if it is paired with intervention components that have proven beneficial in other contexts. For instance, these designs could be used to test how complex genomic risk information may be coupled with established strategies for reducing defensive processing of risk information (e.g., self-affirmation; Epton, Harris, Kane, van Koningsbruggen, & Sheeran, 2015) to promote the adoption of healthy behaviors.
Providing effective communication and education to ensure an individual’s accurate comprehension of complex, multifaceted genomic risk information also has been a challenge. When information is complex and detailed, factual, verbal comprehension may not be a feasible or even an ideal communication outcome; rather, gist-based representations that reflect the “bottom-line” of the information may be more relevant, consistent with research on fuzzy-trace theory and medical decision making (Reyna, 2008, 2012). Applications of interactive web-based software aimed at user-directed learning to allow individuals to review genomic risk information at their own pace might enable gist-understandings. The use of such software has shown promise in the context of education and decision support for BRCA1/2 genetic testing (Wolfe et al., 2015).
Emerging Communications Research
In the sections to follow, we describe communication research that is beginning to address prior critiques and fill gaps identified in the agenda-setting reviews. Consistent with the widely endorsed social ecological model’s premise that effective health promotion efforts relies on interventions that target multiple levels of influence, we now highlight examples of emerging research at the population, interpersonal, and individual levels of influence. In presenting these examples, we give emphasis to those addressing external validity, conceptualizing new outcomes drawn from new conceptual approaches, and pursuing novel study designs as these approaches could address previously identified weaknesses.
Population Level Studies
The aim for population level research is to improve health outcomes among whole populations. From a communications perspective, this will require that dissemination of applications coming from genomic discovery will occur through various channels, in ways that can be sustained and allow for updating in step with ongoing discovery. Improving the external validity of research to inform these endeavors will necessitate broadening the target groups included in research. Accordingly, agenda-setting reviews call for consideration of communication theories and use of novel study designs that move beyond audiences’ consideration of hypothetical scenarios.
Evidence is consistent that sectors of the public are not adequately prepared to: judge media presentations of genomic discovery, be informed consumers of genomics-informed products, or partner with health care providers in managing their health (Hurle et al., 2013). Thus, research concerning how to build optimal genomic literacy to obtain, process, understand, and use genomic information in health-related contexts is essential. Currently, tools used to gauge genomic literacy among the general public, health care providers, and patients rest predominantly on familiarity with genetic and genomic concepts and terminology (e.g., patterns of inheritance, genes) and awareness of specific health applications of genetic discovery (e.g., genetic tests, pharmacogenomics) (Abrams et al., 2015). Given that there is no consensus on what knowledge is needed to build the public’s genomic literacy, some researchers have used public engagement strategies to enlist communities’ to consider emerging genomic information. Most recently, researchers have explored using deliberative workshops in which individuals are engaged in small groups to discuss the utility and acceptability of different approaches to population screening for colon cancer and Type 2 diabetes (Nicholls et al., 2016). These efforts suggest that the public considers the context in which genetic testing is offered and results provided to be very important in their views of acceptability of testing. Researchers have also used the input of relevant stakeholders (e.g., scientific experts, members of the general public, community consultants, and patients) to develop educational materials, such as an online video describing whole genome sequencing, which are scalable, accessible, and intended to increase genetic literacy among the public (Sanderson et al., 2016).
Others have improved on hypothetical vignette approaches by taking advantage of so-called natural experiments. A recent example was provided when actress and filmmaker Angelina Jolie published an op-ed in the New York Times about her unusually high risk for breast cancer due to a BRCA1 mutation and her decision to have both breasts surgically removed (Jolie, 2013). Jolie encouraged women to seek information, explore options, and take action regarding their own cancer risk—messages she reiterated in March 2015 when announcing her decision to surgically remove her ovaries and fallopian tubes as well (Pitt, 2015). Exploring the legitimacy of worries about the public effect of Jolie’s announcement, Borzekowski and colleagues conducted a nationally representative study and found that familiarity with Jolie’s news was not associated with improved understanding, and also may have confused observers’ conceptions of familial breast cancer risk (Borzekowski, Guan, Smith, Erby, & Roter, 2013).
Other researchers used novel approaches to examine public perceptions of Jolie’s decision with respect to their levels of misunderstanding about the rarity of BRCA1/2 mutations; misunderstandings that could lead to unnecessary actions. For example, Kamenova and colleagues (Kamenova, Reshef, & Caulfield, 2014), analyzed newspaper coverage of the announcement in the United States, Canada, and the United Kingdom showing that information concerning the rarity of the BRCA1/2 mutations was not communicated to the public. Juthe and colleagues (Juthe, Zaharchuk, & Wang, 2015) also examined traffic to several cancer-related online resources on the day of the Jolie announcement and found a dramatic and immediate increase (over 700-fold increase) in visits to these sites. Similarly, Noar and colleagues (Noar, Althouse, Ayers, Francis, & Ribisl, 2015) examined breast cancer-related Internet search queries in the United States, and observed a dramatic uptick in such information seeking following Jolie’s announcement. Additionally, monitoring of referrals for risk-reducing mastectomy in the United Kingdom showed immediate (Evans et al., 2014), and sustained increases after the Jolie announcement (Evans et al., 2015).
Abrams and colleagues assessed genomic literacy and its influence on attitudes toward the appropriateness of Jolie’s decision (Abrams et al., 2016). An online survey with a demographically diverse consumer panel sample (N=1008) was conducted. Participants were asked to read information about BRCA1/2 mutations displayed using evidence-based graphical approaches for conveying risk. Consistent with moderators suggested by conceptual models of information seeking, Abrams linked participants’ competencies at answering questions about the information with their self-assessed confidence to understand genomics and reported frequency of exposure to the Jolie public narrative. Findings suggested that having higher genetic literacy skills (based on the number of correct responses) increased the public’s ability to form opinions about clinical applications of genomic discovery. However, repeated media exposure to the Jolie story also appeared to artificially inflate confidence to evaluate these applications among those with low genetic literacy.
There also has been a call for research that addresses individuals’ understanding of the broader, societal implications of the translation of genomic discoveries. Such research requires engagement of diverse and representative samples. Research conducted with large-scale survey data collected from the general public through the Behavioral Risk Factor Surveillance System (Parkman et al., 2015) and from physicians registered with the American Academy of Family Physicians (Laedtke, O’Neill, Rubinstein, & Vogel, 2012) has demonstrated that, in general, awareness of legal protections provided through the Genetic Information Nondiscrimination Act of 2008 (GINA) is low. Such limited understanding may serve as a key barrier to the uptake of genetic testing discoveries on a large scale and subsequent anticipated public health benefits.
Interpersonal Level Studies
Genomic risk information has important implications for the interpersonal communication that occurs between individuals and their family members. What is unique to genetic risk is that it is shared within families (in addition to behavioral and environmental exposures). Individuals who undergo genetic testing may choose to discuss their testing experience and results with their relatives to inform them about shared disease risks and encourage the adoption of surveillance and preventive behaviors. Individuals may also choose to communicate their genetic test results to families as a means of processing and coping with this information, and obtaining informational, emotional, or tangible social support.
Studies conducted in the context of genetic testing for hereditary cancer risk have found that most individuals do choose to share their genetic test results with members of their families (Kaphingst et al., 2012; Taber et al., 2015). A review of qualitative research on family communication in this context (Chivers Seymour, Addington-Hall, Lucassen, & Foster, 2010) suggested that individuals were most likely to engage in family communication when they: were motivated to seek testing as a means to gain information for their families, felt a responsibility to warn others of shared risk, had adequate time to process the genetic information, had close relationships with their family members, and had been encouraged and supported by health care providers to engage in family communication. Others have extended this research to low-resourced public health settings and found that racial and ethnic minority groups may be especially inclined to want to engage in genomic interventions that foster family communication (Kaphingst et al., 2015).
Consistent with social network theory, characteristics of family members and the family structure have been shown to influence the extent to which genetic risk information is disclosed. For example, by examining the social interactions of women with BRCA1/2 mutations and their families, Koehly and colleagues (Koehly et al., 2009) characterized the various roles that family members can play in the communication of health information about the risk of hereditary breast and ovarian cancer. In this setting, older family members, such as parents, played an important role as information gatherers who searched for relevant information about cancer and risk. Furthermore, female family members most frequently served as information gatherers and disseminators, encouraging and participating in discussions about cancer and genetic risk within the family. Finally, blockers of health information exchanges tended to be spouses or partners and male first-degree relatives of women with BRCA1/2 mutations. Increasingly, there has been attention to the motives for seeking genetic information related to older generations sharing health information with younger family members (Ashida et al., 2009).
Some family communication research has also investigated the process by which parents do or do not share their own genetic risk information with minor-aged children. Research in the setting of BRCA1/2 genetic testing has demonstrated that many parents choose to disclose their genetic test results to their minor children (Tercyak et al., 2001, 2013; Tercyak, Peshkin, DeMarco, Brogan, & Lerman, 2002). Yet, this decision is often very challenging for parents due to multiple and competing desires to keep their children informed about family health risks, protect them from potentially upsetting information that they may not be prepared to receive, and limit their exposure to information that they may not be able to medically act upon given their young age (Patenaude et al., 2013).
Similar work has been conducted in the context of common disease. For example, Tercyak and colleagues examined parents who had opted for a multiplex susceptibility test for eight common health conditions and their preferences for seeking similar testing for their dependent children. Results indicated that parents generally did not find a lot of value in the test information for their own health, yet they expressed favorable attitudes toward having their children tested (Madeo, Tercyak, Tarini, & McBride, 2014) and perceived more benefits than risks to testing (Tercyak et al., 2011). These results suggest that motives to promote health in their children might be a traction point for future interventions that include genetic risk information.
In addition, several studies have begun to explore how the familial nature of disease risks can be used to promote behavior change. For instance, a recent study examined the extent to which providing family health history-based risk information for heart disease and diabetes affected Mexican-origin parents’ and their children’s encouragement of one another to engage in physical activity and healthy weight management, as well as their engagement in physical activity together (de Heer et al., 2017). These researchers based their hypotheses on communal coping, a theory that suggests information can catalyze motivation within social networks when there is a perception of shared threat (Afifi, Hutchinson, & Krouse, 2006; Lyons, Mickelson, Sullivan, & Coyne, 1998). The investigators evaluated whether this proactive coping would be best catalyzed by providing feedback based on family health history assessments that reflected shared disease susceptibility to one versus all household members. De Heer and colleagues (de Heer et al., 2017) provided adult household members with family health history-based risk information for heart disease and diabetes. Results indicated that the provision of this risk information to all adults in a household led to increased parent-to-child behavioral encouragement. In addition, greater behavioral encouragement was associated with greater co-engagement between parents and their children in physical activity.
Similarly, McBride and colleagues in a randomized trial evaluated how mothers’ food choices for a young child were influenced by information they received related to their child’s risk for overweight and obesity. Mothers were randomized to receive causal information about being overweight in childhood (behavioral factors alone or behavioral and family history). Mothers then donned headsets to be immersed in a virtual buffet in which they were asked to choose items from the buffet for their five-year-old child. The researchers found that mothers’ sense of responsibility for conveying the risk (mother was overweight but not father) and related elicitations of guilty feelings about conveying inherited risk were significantly associated with the mother choosing lower total calories for the child than when she felt less responsibility and guilt (McBride, Persky, Wagner, Faith, & Ward, 2013; Persky, McBride, Faith, Wagner, & Ward, 2015).
Attempts to better understand and improve the communication that occurs between patients and health care providers have also been made. Joseph and colleagues (Joseph et al., 2017) have conducted research to address noted limitations regarding the underutilization of genetic testing services among diverse groups. Through real-time assessment of genetic counseling sessions between cancer genetic counselors and English-, Spanish-, and Chinese-speaking public hospital patients, the investigators identified specific areas of information mismatch that contribute to ineffective communication. This team has also undertaken efforts to develop educational materials for medical interpreters that can improve their understanding and communication of genetic concepts to diverse patients (California Healthcare Interpreting Association, 2017).
Investigating aspects of patient-provider communication, particularly outside of traditional genetic counseling interactions, also has been undertaken. Newer experimental approaches are being used to enhance the external validity of such research. For example, immersive virtual environments (i.e., virtual reality) have been used to create virtual clinical environments that enable realistic medical encounters while allowing for considerable experimental control. In turn, virtual patients or health care providers have been used to investigate communications with co-actor study participants (Persky & Eccleston, 2011b; Persky, Ferrer, & Klein, 2016). For example, Persky and Eccleston (2011a) used this technology to explore how exposure to messages about behavioral and genetic contributions to obesity influenced medical students’ interactions with overweight patients. The investigators grounded their research questions in the dyadic model proposed by Walsh and McPhee (1992) that considers how communication is influenced conjointly by health care provider and patient characteristics. Medical students were randomized to consider different sources of evidence about the causes of obesity, and then engaged in interactions with a virtual patient who was either obese or normal weight. Results indicated that medical students who read about genetic contributions to obesity were less likely to stigmatize an obese patient, but also were less likely to recommend that the patient seek behavioral interventions such as exercise and dietary consultations.
Individual Level Studies
As mentioned previously, most research has focused on using genomic risk information to motivate health behavior change as the primary outcome with few showing any impact. Agenda-setting commentaries recommended that a broader set of outcomes be considered. The Multiplex Initiative was among the first studies to “bring science to supposition” regarding the effects of genetic testing on health care information seeking and utilization. Conducted in a large managed care organization in the Midwest, study investigators first used an evidence-based selection process to identify 15 genetic variants reliably associated with increased risk for eight common health conditions (Wade, McBride, Kardia, & Brody, 2010). The aim was to share these multiplex test results and the uncertainty of these tests with study participants, and to evaluate factors influencing consideration and uptake of testing and their downstream effects on health care use. The study surveyed 1959 adults, approximately half Caucasian and half African American (aged 25–40 years) via a baseline survey. Participants were then directed to a website that offered them detailed information about testing. The website material was developed using health literacy and risk communication best practices, such as prioritizing essential information, providing users with options for order and amount of material reviewed, avoidance of jargon, and the use of pictures to visually display quantitative information. Kaphingst and colleagues Kaphingst and colleagues (2012) found high levels of prompted recall of test results for all eight conditions among the 199 who tested. Monitoring of website use patterns showed that participants gave relatively cursory review of the materials (Kaphingst et al., 2012). Additionally, Multiplex participants showed preferences for testing some conditions over others, or a subset of conditions, based on logical established risks (such as lower interest in osteoporosis risk testing among men, lower interest in skin cancer risk testing among African Americans) and that disease worry and risk perceptions in part, drove interest in testing (Shiloh, Wade, Roberts, Alford, & Biesecker, 2013).
Furthermore, Reid and colleagues (2012) found that testing itself did not lead to a subsequent increase in utilization of health care services. Interestingly, those who elected Multiplex testing had higher pre-test utilization of health services (measured directly via service records) than those who did not elect Multiplex testing. This finding again contradicted concerns that implementing these tests would have the potential to increase use of health services.
Another line of research points to personal utility as an outcome for consideration in genetic risk communication (Grosse, McBride, Evans, & Khoury, 2009). Green and colleagues have conducted a series of analyses as part of an ongoing cohort study examining the impact of disclosing genetic susceptibility for a prevalent, severe, and incurable neurological condition, Alzheimer’s disease (AD). “The Risk Evaluation and Education for Alzheimer’s Disease” (Roberts, Christensen, & Green, 2011) cohort study has tested provision of susceptibility feedback based on the APOE gene that is associated with acquisition of brain plaques. Currently, there is no evidence base to support any behavioral recommendations for prevention. Yet, participants who underwent susceptibility testing identified a number of personal benefits that included financial and family preparation for AD, and feeling better informed about AD risk. Moreover, results also supported consideration of other behavioral outcomes. For example, those at heightened risk were more likely to buy long-term care insurance than those at lower risk.
An additional critique of past research is that conveying genetic risk information based on single genes or variants oversimplifies the risk story as common health conditions are influenced by numerous genes in complex interactions with each other and with other social and behavioral factors. The public generally has low literacy regarding these complex associations (Condit & Shen, 2011). Indeed, there is evidence that under-appreciation of this complexity leads those with low literacy to be deterministic, believing that genetic diseases are unavoidable. Increasing emphasis on global health and concerns that low- and middle-income countries not be left behind in genomic translation health benefits behooves health communicators to consider these contexts of low general literacy. It has been suggested that communication strategies such as metaphors concerning environmental responsivity could be developed and evaluated for their effectiveness in reducing target audiences’ likelihood of ascribing a deterministic role to genetics (Cameron et al., 2012; Parrott & Smith, 2014).
Efforts to evaluate communication approaches to convey this complexity are rarer than might be expected. However, one research group has been evaluating the effects of communicating information about gene by environment influences on development of a neglected tropical disease called podoconiosis. Evidence to date suggests that walking barefoot in soil with high levels of silica particles can lead to lymphatic inflammation among genetically susceptible families living in highland Ethiopia (Tekola Ayele et al., 2012). A number of studies also have revealed prevalent misconceptions regarding the causes of podoconiosis among the general public and health professionals in endemic areas (Ayode et al., 2012). McBride and colleagues conducted a cluster randomized intervention testing whether a metaphor about how environmental exposure in interaction with individual vulnerability increased the importance for some more than others to wear shoes (McBride et al., 2015a). Trial results indicated that genetic knowledge, as well as levels of enacted and experienced stigma improved in the communities that received the educational module and follow-up booster session about how inherited susceptibility interacted with exposure to increase risk of podoconiosis. These benefits were greatest among households of unaffected families (McBride et al., 2015a). However, qualitative examination of the participant-reported interpretations of the risk information suggested that inherited sensitivity was a concept that may over time take on a negative tone and become construed as weakness (Tora et al., 2016). This supports prior agenda-setting reviews that suggested genetic risk communication likely will not be a one-time occurrence but will necessitate serialized interactions.
Emerging genetic discovery and technological advances likely will continue to expand the need for communication research. For example, the demands of conveying results of whole genome and exome sequencing information that will be quite detailed and often ambiguous, will likely raise new and concerted consideration of health literacy, provider-patient communication, and public information channels. Further, communication research will inform how best to consider patient preferences in shaping efforts to inform and educate patients and the general public regarding genomic testing options and new technologies. Communication theories and outcomes that have largely been overlooked until now will likely gain prominence in the field. Moreover, the increased complexity of genomic information products will necessitate formative research to characterize ways to package information to be understandable. Currently, the field is wide open for research.
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