Attitudes Toward Direct-to-Consumer Advertisements and Online Genetic Testing Among High-Risk Women Participating in a Hereditary Cancer Clinic

Perez, Giselle K.; Cruess, Dean G.; Cruess, Stacy; Brewer, Molly; Stroop, Jennifer; Schwartz, R C; Greenstein, Robert M.

doi:10.1080/10810730.2011.551993

Cited by 16 publications

(15 citation statements)

References 57 publications

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“…Although the counsellors in the study by Giovanni et al (2010) were equally divided on whether genetic testing should be limited to a clinical setting, over half of them agreed that it was acceptable if counselling was provided. This finding is supported by previous research (Wilde et al 2011;Gray et al 2011;Perez et al 2011) that there was a preference among consumers to access genetic tests via a health professional. In one US study, among the health professionals who were aware of DTC testing, 43 % cited benefits such as the ability to offer relevant screening tests at an earlier age and to offer more frequent screening as appropriate (Powell et al 2011).…”

Section: Discussionsupporting

confidence: 87%

Direct-to-consumer genomic testing from the perspective of the health professional: a systematic review of the literature

et al. 2013

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Since the 1990s, there has been a rapid expansion in the number and type of genetic tests available via health professionals; the last 10 years, however, have seen certain types of genetic and genomic tests available direct-to-consumer. The aim of this systematic review was to explore the topic of direct-to-consumer genetic testing from the health professional perspective. Search terms used to identify studies were 'direct-to-consumer', personal genom*, health* professional*, physician* 'genomic, genetic' in five bibliographic databases, together with citation searching. Eight quantitative papers were reviewed. Findings indicate a low level of awareness and experience of direct-to-consumer testing in health professionals. Inconsistent levels of knowledge and understanding were also found with two studies showing significant effects for gender and age. Concerns about clinical utility and lack of counselling were identified. Health professionals specialising in genetics were most likely to express concerns. There was also evidence of perceived increased workload for health professionals post-testing. However, some health professionals rated such tests clinically useful and cited benefits such as the increased opportunity for early screening. Despite limited awareness, knowledge and experience of actual cases, we concluded that the concerns and potential benefits expressed may be warranted. It may be useful to explore the attitudes and experiences of health professionals in more depth using a qualitative approach. Finally, it is essential that health professionals receive sufficient education and guidelines to equip them to help patients presenting with the results of these tests.

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Section: Discussionsupporting

confidence: 87%

Direct-to-consumer genomic testing from the perspective of the health professional: a systematic review of the literature

et al. 2013

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“…For instance, a study of cystic fibrosis patients and parents in Belgium demonstrated considerable skepticism toward commercial companies, with 41% of participants believing that the law should forbid genetic testing being offered directly to consumers . Similarly, among 86 women at high risk for breast and ovarian cancer in the United States (Connecticut), only 20% reported support for accessing genetic testing for breast cancer through online services …”

Section: Discussionmentioning

confidence: 99%

Consumer Perspectives on Access to Direct‐to‐Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience

et al. 2017

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The policy context of direct‐to‐consumer personal genomic testing (DTC‐PGT) has been evolving over the last decade, with little empirical data available about consumers’ perspectives. A majority of consumers of DTC‐PGT supported expanded access to services and their integration into the medical context and opposed more governmental regulation. Consumers’ attitudes about access to services and regulation did not vary based on the specific genetic risk information they received from companies, but may vary based on whether consumers perceived their DTC experience negatively. Context While policymakers have been considering the appropriateness of direct‐to‐consumer personal genomic testing (DTC‐PGT) for more than a decade, there is little empirical data on consumers’ views regarding the regulation of these products. No research has assessed whether consumers’ personal experience with testing is related to their views about access to and regulation of DTC tests. Methods Data were analyzed from the PGen Study, a longitudinal prospective cohort of DTC‐PGT customers of 23andMe (n = 564) and Pathway Genomics (n = 377; total N = 941). Consumers were sent an electronic survey before receiving genetic test results and again 6 months after receipt of results. Findings At the 6‐month follow‐up, more than 80% of participants believed that people have a right to access genetic information directly, that parents should be able to get DTC‐PGT testing for their children, and that genetic information should be kept private. Participants supported health insurance coverage of PGT (60%), wider availability of PGT (68%), and inclusion of genetic information in medical records (63%). Participants were less supportive of government regulation (28%) and restricting testing to clinical settings (14%). Conservative political ideology was associated with less support for government regulation (P < 0.001), as was feeling more confident in one's genetic knowledge (P < 0.05). Participants’ level of computed genetic risk for common diseases, as indicated by their actual test results received from companies, showed no relationship with attitudes. However, those who perceived that they had received elevated risk results expressed lower support for expanded availability and incorporation of PGT into health care (P < 0.01). Those who reported being upset by their genetic test results were less likely to endorse access to DTC products without a medical professional (P < 0.01). Conclusions PGT consumers supported expanded access to these services and opposed additional regulation. Users who had a negative personal experience with PGT testing were less supportive of expanded availability without a medical professional.

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“…Individuals who seek this more predictive type of genetic testing have personal and/or familial contact with the disease. This experience can shape their general awareness, attitudes and responses to testing (Molinger et al 1998; Perez et al 2011; Sussner et al 2010). Although our college smokers demonstrated general awareness of genetic susceptibility testing and specific knowledge of genetic concepts, several themes emerged that require careful consideration among health professionals looking to use genetic testing as a vehicle to motivate disease prevention or behavior change.…”

Section: Discussionmentioning

confidence: 99%

Young smokers’ views of genetic susceptibility testing for lung cancer risk: minding unintended consequences

et al. 2011

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Assessment of smokers’ responses to individualized feedback of genetic susceptibility has shown little or no influence on smoking cessation outcomes. One explanation is that smokers may be having unintended responses that undermine the feedback’s motivational impact (e.g., fatalism or downplaying risk). In preparation for a large randomized trial with college smokers, we conducted a qualitative pilot study to explore smokers’ motives for genetic testing and how these motives might influence interpretation of genetic risk feedback. Prior to reviewing informational materials describing a test for the glutathione S-transferase M1 gene, 33 college smokers (18 to 21 years) participated in a 30 minute, semi-structured, open-ended interview regarding their attitudes on health risks, genetic testing in general, genetic testing for lung cancer risk, and informational needs regarding genetics and genetic testing for lung cancer risk. Two central themes emerged from analysis of the interviews: general impressions of genetic testing and perceived value of genetic testing. Prominent in the second theme was the finding that genetic risk feedback may be unsuccessful in motivating quitting a) due to skepticism about genetic tests, b) participants dismissing genetic feedback as personally irrelevant, and c) participants receiving low risk results justifying continued smoking in light of public health messages that “it’s never too late to quit”. These findings require careful consideration among health professionals looking to genetic risk feedback as a vehicle to motivate disease prevention or behavior change.

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Attitudes Toward Direct-to-Consumer Advertisements and Online Genetic Testing Among High-Risk Women Participating in a Hereditary Cancer Clinic

Cited by 16 publications

References 57 publications

Direct-to-consumer genomic testing from the perspective of the health professional: a systematic review of the literature

Direct-to-consumer genomic testing from the perspective of the health professional: a systematic review of the literature

Consumer Perspectives on Access to Direct‐to‐Consumer Genetic Testing: Role of Demographic Factors and the Testing Experience

Young smokers’ views of genetic susceptibility testing for lung cancer risk: minding unintended consequences

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