Public Awareness of Direct-to-Consumer Genetic Tests: Findings from the 2013 U.S. Health Information National Trends Survey

Agurs‐Collins, Tanya; Ferrer, Rebecca A.; Ottenbacher, Allison; Waters, Erika A.; O’Connell, Mary Ellen; Hamilton, Jada G.

doi:10.1007/s13187-014-0784-x

Cited by 52 publications

(54 citation statements)

References 19 publications

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“…Although DTC genetic testing is frequently advertised via the Internet [1,50], and study participants cited the Internet as a top information resource, none of the participants explicitly described or referenced DTC genetic tests. This finding is consistent with past studies that have found generally low levels of awareness of DTC genetic testing among Latinos, as well as other racial and ethnic groups [51,52]. Given our observation that Latinos of low acculturation have limited understanding of the scope of health information provided by genetic testing, these individuals may benefit from educational materials that help them to evaluate and interpret the complex and sometimes misleading messages regarding DTC genetic tests [50].…”

Section: Discussionsupporting

confidence: 91%

Genetic Testing Awareness and Attitudes among Latinos: Exploring Shared Perceptions and Gender-Based Differences

Hamilton

Shuk²,

Arniella³

et al. 2015

Public Health Genomics

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Background: Latinos, whose views are infrequently examined in genomic research, may be at risk of missing out on the benefits of genomic medicine. Aims: To explore this possibility, we conducted a qualitative study of awareness and attitudes about genetic testing among Latinos with lower acculturation in New York City. Methods: We conducted four focus groups (7 English-speaking men, 5 Spanish-speaking men, 13 English-speaking women and 13 Spanish-speaking women) to explore factors that influence the adoption of new innovations through the discussion of genetic testing in general, and a hypothetical vignette describing a genetic test for skin cancer risk, in particular. Results: Through inductive thematic text analysis of focus group transcripts, our multidisciplinary team identified themes within knowledge and attitudes, communication and sources of information, anticipated responses, factors that may increase adoption, and barriers to adoption of genetic testing. Specifically, a majority of participants expressed some degree of uncertainty regarding the purpose of genetic tests and information these tests provide, rarely discussed genetic testing with others in their social networks, and expressed concerns about the misuse of and possible adverse emotional responses to genetic information. However, participants also expressed high levels of interest in receiving a skin cancer genetic test in response to the vignette and believed that receiving actionable health information was a primary reason to consider testing. Gender-based differences in perceived barriers to testing emerged. Conclusions: The results highlight beliefs and barriers that future interventions could target to help ensure that Latinos have adequate understanding of and access to genomic medicine advances.

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Section: Discussionsupporting

confidence: 91%

Genetic Testing Awareness and Attitudes among Latinos: Exploring Shared Perceptions and Gender-Based Differences

Hamilton

Shuk²,

Arniella³

et al. 2015

Public Health Genomics

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“…Two of the reviewed studies also found generally unfavorable attitudes regarding the utility of directto-consumer genetic tests. 33,45 As public awareness and use of direct-to-consumer testing grows, 68,69 PCPs are likely to be confronted with patients seeking clarity, interpretation, or reassurance about these results. 70,71 Research is needed to develop and evaluate educational and communication interventions that prepare PCPs to navigate these situations and to help their patients recognize the limitations of these tests.…”

Section: Discussionmentioning

confidence: 99%

Primary care providers’ cancer genetic testing-related knowledge, attitudes, and communication behaviors: A systematic review and research agenda

et al. 2016

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BACKGROUND: Primary care providers (PCPs) can play a critical role in helping patients receive the preventive health benefits of cancer genetic risk information. Thus, the objective of this systematic review was to identify studies of US PCPs' knowledge, attitudes, and communication-related behaviors regarding genetic tests that could inform risk-stratification approaches for breast, colorectal, and prostate cancer screening in order to describe current findings and research gaps. METHODS: We conducted a systematic search of six electronic databases to identify peer-reviewed empirical articles relating to US PCPs and genetic testing for breast, colorectal, or prostate cancer published in English from 2008 to 2016. We reviewed these data and used narrative synthesis methods to integrate findings into a descriptive summary and identify research needs. RESULTS: We identified 27 relevant articles. Most focused on genetic testing for breast cancer (23/27) and colorectal cancer risk (12/27); only one study examined testing for prostate cancer risk. Most articles addressed descriptive research questions (24/27). Many studies (24/27) documented PCPs' knowledge, often concluding that providers' knowledge was incomplete. Studies commonly (11/27) examined PCPs' attitudes. Across studies, PCPs expressed some concerns about ethical, legal, and social implications of testing. Attitudes about the utility of clinical genetic testing, including for targeted cancer screening, were generally favorable; PCPs were more skeptical of direct-to-consumer testing. Relatively fewer studies (9/27) examined PCPs' communication practices regarding cancer genetic testing. DISCUSSION: This review indicates a need for investigators to move beyond descriptive research questions related to PCPs' knowledge and attitudes about cancer genetic testing. Research is needed to address important gaps regarding the development, testing, and implementation of innovative interventions and educational programs that can improve PCPs' genetic testing knowledge, assuage concerns about the appropriateness of cancer genetic testing, and promote open and effective patientprovider communication about genetic risk and genetic testing.

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“…Information seeking was related to increased genetic knowledge among family members and patients with inherited bone marrow failure syndromes in one study (Hamilton et al, 2015), and increased awareness of direct-to-consumer (DTC) genetic testing in another (Agurs-Collins et al, 2015). Research about the association between information scanning and genetics-related knowledge is lacking, and similarly, no research has examined how information seeking or scanning may be related to the endorsement of multifactorial beliefs about cancer.…”

Section: Introductionmentioning

confidence: 99%

How Are Information Seeking, Scanning, and Processing Related to Beliefs About the Roles of Genetics and Behavior in Cancer Causation?

Waters

Wheeler

Hamilton

2016

Journal of Health Communication

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Background Understanding that cancer is caused by both genetic and behavioral risk factors is an important component of genomic literacy. However, a considerable percentage of people in the U.S. do not endorse such multifactorial beliefs. Methods Using nationally representative cross-sectional data from the U.S. Health Information National Trends Survey (N=2,529), we examined how information seeking, information scanning, and key information processing characteristics were associated with endorsing a multifactorial model of cancer causation. Results Multifactorial beliefs about cancer were more common among respondents who engaged in cancer information scanning (p=.001), were motivated to process health information (p=.005), and who reported a family history of cancer (p=.0002). Respondents who reported having previous negative information seeking experiences had lower odds of endorsing multifactorial beliefs (p=.01). Multifactorial beliefs were not associated with cancer information seeking, trusting cancer information obtained from the Internet, trusting cancer information from a physician, self-efficacy for obtaining cancer information, numeracy, or being aware of direct-to-consumer genetic testing (ps>.05). Conclusion Gaining additional understanding of how people access, process, and use health information will be critical for the continued development and dissemination of effective health communication interventions and for the further translation of genomics research to public health and clinical practice.

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Public Awareness of Direct-to-Consumer Genetic Tests: Findings from the 2013 U.S. Health Information National Trends Survey

Cited by 52 publications

References 19 publications

Genetic Testing Awareness and Attitudes among Latinos: Exploring Shared Perceptions and Gender-Based Differences

Genetic Testing Awareness and Attitudes among Latinos: Exploring Shared Perceptions and Gender-Based Differences

Primary care providers’ cancer genetic testing-related knowledge, attitudes, and communication behaviors: A systematic review and research agenda

How Are Information Seeking, Scanning, and Processing Related to Beliefs About the Roles of Genetics and Behavior in Cancer Causation?

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