The Behavioral Response to Personalized Genetic Information: Will Genetic Risk Profiles Motivate Individuals and Families to Choose More Healthful Behaviors?

Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, Maryland 20892, USA.
Annual Review of Public Health (Impact Factor: 6.47). 04/2010; 31(1):89-103. DOI: 10.1146/annurev.publhealth.012809.103532
Source: PubMed


This report describes the use of information emerging from genetic discovery to motivate risk-reducing health behaviors. Most research to date has evaluated the effects of information related to rare genetic variants on screening behaviors, in which genetic risk feedback has been associated consistently with improved screening adherence. The limited research with common genetic variants suggests that genetic information, when based on single-gene variants with low-risk probabilities, has little impact on behavior. The effect on behavioral outcomes of more realistic testing scenarios in which genetic risk is based on numerous genetic variants is largely unexplored. Little attention has been directed to matching genetic information to the literacy levels of target audiences. Another promising area for research is consideration of using genetic information to identify risk shared within kinship networks and to expand the influence of behavior change beyond the individual.

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    • "Not only is genetic risk information permeating everyday medical practice (Shields, Burke, and Levy 2008), it is also being offered directly to consumers by for-profit companies (Caulfield and McGuire 2012). As a result, clinicians and public health researchers have called for more data about how healthy people in the general population react to genetic risk information (McBride et al. 2010), particularly for common conditions (Scheuner, Sieverding, and Shekelle 2008). Will learning about their own genetic risk inspire individuals to seek information and attempt to manage the threat? "
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    ABSTRACT: Medical sociologists contend that we are living in an era of surveillance medicine, in which the emphasis on risk blurs the lines between health and disease. Yet, data to examine these claims are generally drawn from patients, raising questions about whether this modern experience of medical risk extends beyond the clinic to healthy people in the larger population. We use the specific case of genetic risk to construct a survey experiment designed to induce the conditions theorized by surveillance medicine. Each respondent in a nationally representative sample (N = 2,100) was assigned a genetic risk (20%, 30% . . . 80%) for a disease (colon cancer, heart disease, Alzheimer’s disease) and asked about many potential reactions. We find that people in the general population—regardless of health status or family history—respond to hypothetical genetic risk information by wanting to take action, and their reactions are stronger in domains related to self and family than to community and polity.
    Journal of Health and Social Behavior 12/2014; 55(4):482-503. DOI:10.1177/0022146514555982 · 2.72 Impact Factor
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    • "This notion is supported by models of behaviour suggesting that perceived susceptibility and expected outcomes play a large role in influencing behaviours (Redding et al., 2000). However, the theoretical benefit may not be as significant as anticipated (McBride et al., 2010). A Cochrane review concluded that, overall, there was no effect of communicating DNAbased risk estimates on changing behaviours relating to smoking, exercise or the consumption of supplements (Marteau et al., 2010). "
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    ABSTRACT: In the future, it may be possible for individuals to take a genetic test to determine their genetic predisposition towards developing lifestyle-related chronic diseases. A systematic review of the literature was undertaken to identify the factors associated with an interest in having predictive genetic testing for obesity, type II diabetes and heart disease amongst unaffected adults. Ovid Medline, PsycINFO and EMBASE online databases were searched using predefined search terms. Publications meeting the inclusion criteria (English language, free-living adult population not selected as a result of their disease diagnosis, reporting interest as an outcome, not related to a single gene inherited disease) were assessed for quality and content. Narrative synthesis of the results was undertaken. From the 2329 publications retrieved, eight studies met the inclusion criteria and were included in the review. Overall, the evidence base was small but of positive quality. Interest was associated with personal attitudes towards disease risk and the provision of information about genetic testing, shaped by perceived risk of disease and expected outcomes of testing. The role of demographic factors was investigated with largely inconclusive findings. Interest in predictive genetic testing for obesity, type II diabetes or heart disease was greatest amongst those who perceived the risk of disease to be high and/or the outcomes of testing to be beneficial.
    Journal of Human Nutrition and Dietetics 11/2013; 27(5). DOI:10.1111/jhn.12179 · 1.99 Impact Factor
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    • "Patient trust has been reported to be predictive of behaviors such as adherence to preventative services (Jones et al. 2012) and treatment (Safran et al. 1998; Trachtenberg et al. 2005). DTC testing has not been shown to have much of an impact, negative or positive, on behavior or overall understanding of disease risk (Bloss et al. 2011, 2013; James et al. 2011; McBride et al. 2010 "
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    ABSTRACT: Patient trust in personal medical information is critical to increasing adherence to physician recommendations and medications. One of the anticipated benefits of learning of one's genomic risk for common diseases is the increased adoption of screening, preventive care and lifestyle changes. However, the equivocal results thus far reported of the positive impact of knowledge of genomic risk on behavior change may be due to lack of patients' trust in the results. As part of a clinical study to compare two methods of communication of genomic risk results for Type 2 diabetes mellitus (T2DM), we assessed patients' trust and preferred methods of delivery of genomic risk information. A total of 300 participants recruited from the general public in Durham, NC were randomized to receive their genomic risk for T2DM in-person from a genetic counselor or online through the testing company's web-site. Participants completed a baseline survey and three follow-up surveys after receiving results. Overall, participants reported high levels of trust in the test results. Participants who received their results in-person from the genetic counselor were significantly more likely to trust their results than those who reviewed their results on-line (p = 0.005). There was not a statistically significant difference in levels of trust among participants with increased genetic risk, as compared to other those with decreased or same as population risk (p = 0.1154). In the event they undergo genomic risk testing again, 55 % of participants overall indicated they would prefer to receive their results online compared to 28 % that would prefer to receive future results in-person. Of those participants preferring to receive results online, 77 % indicated they would prefer to have the option to speak to someone if they had questions with the online results (compared to accessing results online without the option of professional consultation). This is the first study to assess satisfaction with genomic risk testing by the method of delivery of the test result. The higher rate of trust in results delivered in-person suggests that online access reports may not result in serious consideration of results and lack of adoption of recommended preventive recommendations.
    Journal of Genetic Counseling 06/2013; 23(3). DOI:10.1007/s10897-013-9674-3 · 2.24 Impact Factor
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