“It‘s our DNA, we deserve the right to test!” A content analysis of a petition for the right to access direct-to-consumer genetic testing

Su, Yeyang; Borry, Pascal; Otte, Ina; Howard, Heidi

doi:10.2217/pme.13.69

Cited by 11 publications

(6 citation statements)

References 30 publications

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“…As much as 68% (25/37) of the studies, including case studies, were carried out in the United States [ 32 , 43 , 63 - 66 , 70 , 73 , 75 - 79 , 81 - 93 ]. Excluding case studies, nine studies investigated the DTC-GT experience with people who actually purchased the test [ 32 , 43 , 62 , 67 - 69 , 90 , 91 , 94 ]. In the other studies, participants were investigated only as potential consumers.…”

Section: Resultsmentioning

confidence: 99%

“…In 41% of studies (12/29) [ 32 , 43 , 62 - 68 , 70 , 71 , 90 ], the sample size was very low (fewer than 100 subjects). There are some exceptions: Kaufman et al [ 91 ] recruited 1048 subjects (but with a response rate of only 33%) and Su et al [ 69 ]. Also, six studies [ 81 - 83 , 85 , 86 , 93 ] referred to the same large sample coming from the longitudinal cohort study of 3639 adults recruited from Scripps Health employees, employee family members, and Scripps Health patients who purchased the GT at a discounted rate [ 30 ].…”

Section: Resultsmentioning

confidence: 99%

“…In another context, it was interesting to find that many people signed a petition to support unrestricted access to DTC-GT stating also the health care professional and government should not be placed as intermediaries when purchasing DTC-GT [ 69 ]. The perception of having understood the test results was the main reason for not utilizing the counseling service [ 82 ].…”

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review

Covolo¹,

Rubinelli²,

Ceretti³

et al. 2015

J Med Internet Res

119

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BackgroundDirect-to-consumer genetic tests (DTC-GT) are easily purchased through the Internet, independent of a physician referral or approval for testing, allowing the retrieval of genetic information outside the clinical context. There is a broad debate about the testing validity, their impact on individuals, and what people know and perceive about them.ObjectiveThe aim of this review was to collect evidence on DTC-GT from a comprehensive perspective that unravels the complexity of the phenomenon.MethodsA systematic search was carried out through PubMed, Web of Knowledge, and Embase, in addition to Google Scholar according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist with the key term “Direct-to-consumer genetic test.”ResultsIn the final sample, 118 articles were identified. Articles were summarized in five categories according to their focus on (1) knowledge of, attitude toward use of, and perception of DTC-GT (n=37), (2) the impact of genetic risk information on users (n=37), (3) the opinion of health professionals (n=20), (4) the content of websites selling DTC-GT (n=16), and (5) the scientific evidence and clinical utility of the tests (n=14). Most of the articles analyzed the attitude, knowledge, and perception of DTC-GT, highlighting an interest in using DTC-GT, along with the need for a health care professional to help interpret the results. The articles investigating the content analysis of the websites selling these tests are in agreement that the information provided by the companies about genetic testing is not completely comprehensive for the consumer. Given that risk information can modify consumers’ health behavior, there are surprisingly few studies carried out on actual consumers and they do not confirm the overall concerns on the possible impact of DTC-GT. Data from studies that investigate the quality of the tests offered confirm that they are not informative, have little predictive power, and do not measure genetic risk appropriately.ConclusionsThe impact of DTC-GT on consumers’ health perceptions and behaviors is an emerging concern. However, negative effects on consumers or health benefits have yet to be observed. Nevertheless, since the online market of DTC-GT is expected to grow, it is important to remain aware of a possible impact.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 1 more Smart Citation

Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review

Covolo¹,

Rubinelli²,

Ceretti³

et al. 2015

J Med Internet Res

119

View full text Add to dashboard Cite

show abstract

“…During their lives, individuals may undergo various forms of genetic testing, depending on their aims, for example, to find the cause of their current illness, or a hereditary illness, or to submit their DNA for scientific study [2,3]. Most often individuals go through genetic testing for medical reasons, for instance, to diagnose hereditary pathologies.…”

Section: Introductionmentioning

confidence: 99%

The attitude of young people in the city of Yakutsk to DNA-testing

Кононова¹,

Винокурова

Barashkov³

et al. 2021

International Journal of Circumpolar Health

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This pilot research was one of the first sociological studies with general questions on genetic testing with 300 participants, 75% of which were representatives of one people -the Sakha. A quantitative method was used: a sociological survey with quota sampling (Δ ± 5%), held in February -March 2018 in the City of Yakutsk (n = 350).Analysis of the survey results have shown that the respondents have low levels of awareness about the DNA-testing method: 72.3% "do not know about the method". Only 18.7% of respondents knew that since 2000 the Medical-Genetic Centre of the Sakha Republic (Yakutia) conducts DNA diagnostics for hereditary diseases, with 81.0% replying that they didn't know that. The questionnaire has shown that 90.3% of participants would like to undergo DNA-testing to identify their susceptibility to genetic diseases. Our questionnaire has shown high levels of self-identity among the young Sakha and their desire to learn about their belonging to a specific ethnicity (49.3%) with the assistance of DNA-testing. Furthermore, based on the answers relating to motivations for undergoing DNA-testing, we can say that the respondents have confirmed the peculiarities of their national mindset, specifically, high value of children for a family: "concern for the health of my future children" was a great motivator for taking the test (50.3%).

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“…On the one hand, proponents have been underlining that DTC genetic testing enhances the autonomy of consumers (Vayena 2015 ) and allows them to be in charge of their healthcare management (Marietta and Mcguire 2009 ), all without the intermediary of doctors and long waiting lists for hospital appointments. Furthermore, it has been argued that consumers have a right to their genetic information (Su et al 2013 ) and that, by circumventing the public healthcare system, the privacy of genetic data may be better protected against insurers and employers.…”

Section: Introductionmentioning

confidence: 99%

Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape

et al. 2017

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Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, the Netherlands and the United Kingdom. Emphasis is placed on provisions relating to medical supervision, genetic counselling and informed consent. Our results indicate that currently there is a wide spectrum of laws regarding genetic testing in Europe. There are countries (e.g. France and Germany) which essentially ban DTC genetic testing, while in others (e.g. Luxembourg and Poland) DTC genetic testing may only be restricted by general laws, usually regarding health care services and patients’ rights.

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“It‘s our DNA, we deserve the right to test!” A content analysis of a petition for the right to access direct-to-consumer genetic testing

Cited by 11 publications

References 30 publications

Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review

Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review

The attitude of young people in the city of Yakutsk to DNA-testing

Legislation of direct-to-consumer genetic testing in Europe: a fragmented regulatory landscape

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