Paternity testing under the cloak of recreational genetics

Moray, Nathalie; Pink, Katharina; Borry, Pascal; Larmuseau, Maarten

doi:10.1038/ejhg.2017.31

Cited by 23 publications

(19 citation statements)

References 24 publications

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“…[ 89 ] Little research has been done, moreover, to understand what people think about the revelations inherent in the personal health information that they are often compelled to provide [ 90 ] or the impact of their participation or that of their relatives in direct-to-consumer testing on the availability of data that also have implications about their health. [ 91 , 92 ] Interestingly, at least some who place their personally identified information in open access databases nonetheless expect their privacy to be protected. [ 18 ]…”

Section: Discussionmentioning

confidence: 99%

A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States

et al. 2018

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Concerns about genetic privacy affect individuals’ willingness to accept genetic testing in clinical care and to participate in genomics research. To learn what is already known about these views, we conducted a systematic review, which ultimately analyzed 53 studies involving the perspectives of 47,974 participants on real or hypothetical privacy issues related to human genetic data. Bibliographic databases included MEDLINE, Web of Knowledge, and Sociological Abstracts. Three investigators independently screened studies against predetermined criteria and assessed risk of bias. The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. When asked specifically “are you worried about genetic privacy,” the general public, patients, and professionals frequently said yes. In many cases, however, that question was posed poorly or only in the most general terms. While many participants expressed concern that genomic and medical information would be revealed to others, respondents frequently seemed to conflate privacy, confidentiality, control, and security. People varied widely in how much control they wanted over the use of data. They were more concerned about use by employers, insurers, and the government than they were about researchers and commercial entities. In addition, people are often willing to give up some privacy to obtain other goods. Importantly, little attention was paid to understanding the factors–sociocultural, relational, and media—that influence people’s opinions and decisions. Future investigations should explore in greater depth which concerns about genetic privacy are most salient to people and the social forces and contexts that influence those perceptions. It is also critical to identify the social practices that will make the collection and use of these data more trustworthy for participants as well as to identify the circumstances that lead people to set aside worries and decide to participate in research.

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Section: Discussionmentioning

confidence: 99%

A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States

et al. 2018

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“…As personalized genomic medicine becomes more prevalent, it is important for research paradigms to shift accordingly. Multiple pedigree building resources such as online genealogy repositories, direct‐to‐consumer genetic ancestry testing, and social networking websites now allow patients to easily collect their own family histories and receive sought‐out and incidental genetic findings (Kirkpatrick & Rashkin, ; Lee & Crawley, ; Moray et al, ; Roberts et al, ). Our findings show that patients who are motivated to participate in patient‐driven VUS reclassification activities often achieve their personal goals of resolving uncertainty and increasing knowledge for themselves, their families, and the public.…”

Section: Discussionmentioning

confidence: 99%

“…Motivated patients are interested in obtaining and interpreting their own genetic information, as evidenced by the rapid growth of direct-to-consumer genetic testing, online ancestry networks, pedigree-building software, and third-party variant interpretation tools that make genetic information available and accessible for patients (Kirkpatrick & Rashkin, 2017;Lee & Crawley, 2009;Leighton, Valverde, & Bernhardt, 2012;Moray, Pink, Borry, & Larmuseau, 2017;Nelson & Fullerton, 2018;Roberts et al, 2017;Stewart, Wesselius, Schreurs, Schols, & Zeegers, 2017). Similar to patientdriven research on orphan disease, wherein online patient communities have developed new methodologies, databanks, and sources of public funding for research on rare diseases (Frydman, 2009), patient-driven family studies have the potential to generate data on rare genetic variants more efficiently than researcher or laboratorydriven studies (Eggington et al, 2013).…”

mentioning

confidence: 99%

Patient goals, motivations, and attitudes in a patient‐driven variant reclassification study

Tsai

Garrett

Makhnoon

et al. 2018

Journal of Genetic Counseling

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Family studies to reclassify clinically ascertained variants of uncertain significance (VUS) can impact risk assessment, medical management, and psychological outcomes for patients and their families. There are limited avenues for patients and their families to actively participate in VUS reclassification, and access to family studies at most commercial laboratories is restricted by multiple factors. To explore patient attitudes about participation in family studies for VUS reclassification, we conducted semistructured pre‐ and post‐participation telephone interviews with 38 participants in a family‐based VUS reclassification study that utilized a patient‐driven approach for family ascertainment and recruitment. Participants had VUS from multigene panel testing performed at multiple clinical laboratories for cancer or other disease risk. Inductive thematic analysis of transcribed interviews highlighted four major themes: (a) Participants’ study goals were driven by the desire to resolve uncertainty related to the VUS, (b) Participants had mixed reactions to the VUS reclassification outcomes of the study, (c) Personal, public, and familial knowledge increased through study participation and (d) Participants used study participation to actively cope with the uncertainty of a VUS. As personalized genomic medicine becomes more prevalent, clinicians, clinical laboratories, and researchers could consider creating more opportunities for active partnership with patients and families, who are motivated to contribute data to familial VUS studies.

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“…Consumers purchasing DTC genetic tests may be motivated by curiosity, ancestry, or recreational motivations rather than medical reasons. However, they may uncover serious medical risk factors, non-paternity, or other unexpected genetic information in the process of testing, without having considered the implications beforehand ( 5 , 26 ). In addition, some online tools can now be used to analyze raw genetic data from non-medical DTC tests (such as ancestry tests), to generate interpretations of medical risk.…”

Section: Concerns With Unaccredited Internet-based Dtc Genetic Testsmentioning

confidence: 99%

Regulation of Internet-based Genetic Testing: Challenges for Australia and Other Jurisdictions

Tiller

Lacaze

2018

Front. Public Health

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The Internet currently enables unprecedented ease of access for direct-to-consumer (DTC) genetic testing, with saliva collection kits posted directly to consumer homes from anywhere in the world. This poses new challenges for local jurisdictions in regulating genetic testing, traditionally a tightly-regulated industry. Some Internet-based genetic tests have the capacity to cause significant confusion or harm to consumers who are unaware of the risks or potential variability in quality. The emergence of some online products of questionable content, unsupported by adequate scientific evidence, is a cause for concern. Proliferation of such products in the absence of regulation has the potential to damage public trust in accredited and established clinical genetic testing during a critical period of evidence generation for genomics. Here, we explore the challenges arising from the emergence of Internet-based DTC genetic testing. In particular, there are challenges in regulating unaccredited or potentially harmful Internet-based DTC genetic testing products. In Australia, challenges exist for the Therapeutic Goods Administration, which oversees regulation of the genetic testing sector. Concerns and challenges faced in Australia are likely to reflect those of other comparable non-US jurisdictions. Here, we summarize current Australian regulation, highlight concerns, and offer recommendations on how Australia and other comparable jurisdictions might be more proactive in addressing this emerging public health issue.

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Paternity testing under the cloak of recreational genetics

Cited by 23 publications

References 24 publications

A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States

A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States

Patient goals, motivations, and attitudes in a patient‐driven variant reclassification study

Regulation of Internet-based Genetic Testing: Challenges for Australia and Other Jurisdictions

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