Awareness and Uptake of Direct-to-Consumer Genetic Testing Among Cancer Cases, Their Relatives, and Controls: The Northwest Cancer Genetics Network

Hall, Taryn O.; Renz, Anne; Snapinn, Katherine W.; Bowen, Deborah J.; Edwards, Karen L.

doi:10.1089/gtmb.2011.0235

Cited by 12 publications

(15 citation statements)

References 11 publications

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“…This is consistent with other research on genetic testing, which generally showed lower interest in genetic testing among people who identified with a religion [20]. In contrast to previous research, we found no association with education [11,31] or gender [8,11,30].…”

Section: Demographic Factorssupporting

confidence: 90%

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Factors Associated with Acceptability, Consideration and Intention of Uptake of Direct-To-Consumer Genetic Testing: A Survey Study

Stewart

Kokole

Wesselius

et al. 2018

Public Health Genomics

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Background: With interest in personalised health care growing, so is interest in personal genetic testing. This is now offered direct-to-consumer, thereby referred to as direct-to-consumer genetic testing (DTC-GT). Criticisms have been expressed on whether a truly informed decision to undergo testing is made with regard to these services. In order to provide relevant information to achieve this, knowing the characteristics of the expected user population is helpful. Therefore, the aim of this study is to identify characteristics of individuals who (1) find the concept of DTC-GT acceptable and (2) consider undergoing DTC-GT in the distant or near future. Methods: This cross-sectional study investigated factors associated with acceptability, consideration and intention in the Dutch general population. Studied variables included awareness, principles and how-to knowledge, attitude, innovativeness, and multiple demographic characteristics. Generalised linear models were applied to identify associated variables. Results: Full data was obtained for 836 respondents. Of those, 18.3% found DTC-GT somewhat or totally acceptable, whereas 12.6% considered and 5.5% intended to undergo DTC-GT in the distant or near future. Acceptability was greater with lower principles knowledge, and consideration and intention with lower how-to knowledge. A more positive attitude and greater innovativeness were associated with an increase in all 3 outcomes. Conclusion: Informed decision making may be hampered as individuals with lower how-to knowledge were found to be more interested in pursuing testing. The identified characteristics can be used in development and distribution of public and personalized information, in order to help consumers make a truly informed decision.

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Section: Demographic Factorssupporting

confidence: 90%

“…The items included in the questionnaire were composed based on existing models of behaviour change [9,10], previous literature [11][12][13][14][15][16][17] and expert opinion in the field of genetics, DTC-GT, health education and informed decision-making.…”

Section: Data Collectionmentioning

confidence: 99%

Factors Associated with Acceptability, Consideration and Intention of Uptake of Direct-To-Consumer Genetic Testing: A Survey Study

Stewart

Kokole

Wesselius

et al. 2018

Public Health Genomics

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“…We found a high level of awareness about DTC genomics in our study population [23,24,25,26,27], something that can be explained by the media attention that this issue has received in the German-speaking part of Switzerland over the last 2 years. In general, most respondents who were interested in DTC genomics had a natural science/engineering background.…”

Section: Discussionmentioning

confidence: 87%

Playing a Part in Research? University Students' Attitudes to Direct-To-Consumer Genomics

Vayena

Ineichen

Stoupka³

et al. 2014

Public Health Genomics

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Aims: This study examined the attitudes of 1,146 Swiss University students to direct-to-consumer (DTC) genomic testing and to genomic research participation. Methods: Data were collected through a self-completion online questionnaire by students from 2 higher education institutions in Zurich, Switzerland. The survey aimed to capture motivation for undergoing or refraining from genomic testing, reactions to mock genetic risk results, and views about contributing data to scientific research. Descriptive and inferential statistics were used for the analysis. Results: A total of 1.5% of the students had undergone testing. Most respondents were studying natural sciences and were interested in undergoing DTC genomic testing. The main motive was to contribute their data to scientific research, followed closely by their interest to find out disease risks and personal traits. Overall, 41% of the respondents were not interested in DTC tests. The primary reasons were concerns about receiving potentially worrying results. There was a significant correlation between studying natural sciences, as opposed to the humanities, and interest in undergoing testing. Male respondents were more interested in testing compared to females. There was a strong interest in genetic research participation and notably limited privacy concerns. Conclusion: Although 59% of the respondents were interested in DTC genomic testing, they were not likely to be affected by them or act upon them. This raises questions about concerns relating to potential risks of DTC genomics users and users' understanding of genetic information including their awareness of privacy risks. Furthermore, the strong interest in genetic research participation signals an underexplored personal utility of genomic testing which needs to be both better understood and better harnessed.

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“…Awareness was significantly higher among the following groups: individuals aged 50–74, college graduates, persons with a regular health care source, those with a prior diagnosis of cancer, Internet users, and urban residents. In a related study, Hall et al [15] compared awareness of DTC-GT between individuals with cancer and their first-degree relatives and an unaffected control group. Among the 1,267 survey respondents, 49% were aware of DTC-GT, with the high-risk group demonstrating a significantly greater level of awareness than controls.…”

Section: Resultsmentioning

confidence: 99%

Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies

2013

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Direct-to-consumer genetic testing (DTC-GT) has sparked much controversy and undergone dramatic changes in its brief history. Debates over appropriate health policies regarding DTC-GT would benefit from empirical research on its benefits, harms, and limitations. We review the recent literature (2011-present) and summarize findings across (1) content analyses of DTC-GT websites, (2) studies of consumer perspectives and experiences, and (3) surveys of relevant health care providers. Findings suggest that neither the health benefits envisioned by DTC-GT proponents (e.g., significant improvements in positive health behaviors) nor the worst fears expressed by its critics (e.g., catastrophic psychological distress and misunderstanding of test results, undue burden on the health care system) have materialized to date. However, research in this area is in its early stages and possesses numerous key limitations. We note needs for future studies to illuminate the impact of DTC-GT and thereby guide practice and policy regarding this rapidly evolving approach to personal genomics.

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Awareness and Uptake of Direct-to-Consumer Genetic Testing Among Cancer Cases, Their Relatives, and Controls: The Northwest Cancer Genetics Network

Cited by 12 publications

References 11 publications

Factors Associated with Acceptability, Consideration and Intention of Uptake of Direct-To-Consumer Genetic Testing: A Survey Study

Factors Associated with Acceptability, Consideration and Intention of Uptake of Direct-To-Consumer Genetic Testing: A Survey Study

Playing a Part in Research? University Students' Attitudes to Direct-To-Consumer Genomics

Direct-to-Consumer Genetic Testing and Personal Genomics Services: A Review of Recent Empirical Studies

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