Direct-to-Consumer Genetic Ancestry Testing in Clinical Encounters: Perspectives From Psychotherapy Cases

Rubanovich, Caryn Kseniya; Zhang, Wendy; Bloss, Cinnamon S.

doi:10.2196/23596

Cited by 7 publications

(5 citation statements)

References 13 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Similarly, in discussing what the results would mean for their views about kinship, many participants opined that lived experiences had much more meaning and importance than biological connections. This observation is consistent with the recent argument by Mathieson and Scally [ 52 ] that genetics is only one part of how people understand their ancestry, as well as more longstanding debates about the role of genetics in defining tribal membership [ 53 , 54 ], group inclusion [ 26 , 51 ], and other sociocultural structures from (and within) which people make meaning.…”

Section: Discussionsupporting

confidence: 89%

Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

et al. 2021

View full text Add to dashboard Cite

Direct-to-consumer genetic testing is marketed as a tool to uncover ancestry and kin. Recent studies of actual and potential users have demonstrated that individuals’ responses to the use of these tests for these purposes are complex, with privacy, disruptive consequences, potential for misuse, and secondary use by law enforcement cited as potential concerns. We conducted six focus groups with a diverse sample of participants (n = 62) who were aware of but had not used direct-to-consumer genetic tests, in an effort to understand more about what people considering these tests think about the potential value, risks, and benefits of such testing, taking into account use by third parties, such as potential kin and law enforcement. Participants differed widely in the perceived value of direct-to-consumer genetic tests for ancestry and kinship information for their own lives, including the desirability of contact with previously unknown relatives. Some perceived ancestry testing as mere curiosity or entertainment, while others, particularly those who had gaps in their family history, few living relatives, or who were adopted, saw greater value. Concerns about intrusion into one’s life by purported kin and control of data were widespread, with many participants expressing concern about secondary uses of data that could harm users or their families. The use of direct-to-consumer genetic tests data for forensic genealogy elicited a particularly wide array of reactions, both spontaneously and in response to specific discussion prompts, mirroring the current public debate about law enforcement access to such data. The themes uncovered through our investigation warrant specific attention in the continued development of the science, policy, and practice of commercial direct-to-consumer genetic testing.

show abstract

Section: Discussionsupporting

confidence: 89%

Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

et al. 2021

View full text Add to dashboard Cite

show abstract

“…Since the roundtable discussions, scholarly work examining genetic ancestry inference, descriptions of human variation, and impacts of genetic ancestry testing have continued; 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 industry practices for DTC genetic ancestry inference have changed (for a list of active and inactive DTC companies offering genetic ancestry testing, see https://isogg.org/wiki/List_of_DNA_testing_companies ); and some genetic genealogy standards have emerged. 95 Policy and scholarly developments—for example, regarding privacy harms, 96 data justice and dataveillance concerns, 97 attention brought to Indigenous data sovereignty, 44 and calls in the United States for comprehensive (rather than sector-specific) approaches to personal data protection 98 as well as modernized rules for data access and increased interoperability 99 , 100 , 101 , 102 —have substantial implications for the refinement and implementation of guidelines for genetic ancestry inference and addressing matters of genetic privacy.…”

Section: Discussionmentioning

confidence: 99%

Guidelines for genetic ancestry inference created through roundtable discussions

Wagner¹,

Yu²,

Fullwiley³

et al. 2023

Human Genetics and Genomics Advances

View full text Add to dashboard Cite

“…The use of direct-to-consumer (DTC) genetic testing in conjunction with social media for family history and relative finding is becoming increasingly common [23,24]. However, there can also be potential concerns with the use of these tools, including the need to ensure that those using these tools have the necessary information, support, and discussion to make informed decisions and process any feelings that may result from tool use [25].…”

Section: Introductionmentioning

confidence: 99%

Extended Family Outreach in Hereditary Cancer Using Web-Based Genealogy, Direct-to-Consumer Ancestry Genetics, and Social Media: Mixed Methods Process Evaluation of the ConnectMyVariant Intervention

Chen¹,

Coe²,

Kaganovsky³

et al. 2023

JMIR Cancer

View full text Add to dashboard Cite

Background Cascade screening, defined as helping at-risk relatives get targeted genetic testing of familial variants for dominant hereditary cancer syndromes, is a proven component of cancer prevention; however, its uptake is low. We developed and conducted a pilot study of the ConnectMyVariant intervention, in which participants received support to contact at-risk relatives that extended beyond first-degree relatives and encourage relatives to obtain genetic testing and connect with others having the same variant through email and social media. The support that participants received included listening to participants’ needs, assisting with documentary genealogy to find common ancestors, facilitating direct-to-consumer DNA testing and interpretation, and assisting with database searches. Objective We aimed to assess intervention feasibility, motivations for participating, and engagement among ConnectMyVariant participants and their families. Methods We used a mixed methods design including both quantitative and qualitative evaluation methods. First, we considered intervention feasibility by characterizing recruitment and retention using multiple recruitment mechanisms, including web-based advertising, dissemination of invitations with positive test results, provider recruitment, snowball sampling, and recruitment through web-based social networks and research studies. Second, we characterized participants’ motivations, concerns, and engagement through project documentation of participant engagement in outreach activities and qualitative analysis of participant communications. We used an inductive qualitative data analysis approach to analyze emails, free-text notes, and other communications generated with participants as part of the ConnectMyVariant intervention. Results We identified 84 prospective participants using different recruitment mechanisms; 57 participants were ultimately enrolled in the study for varying lengths of time. With respect to motivations for engaging in the intervention, participants were most interested in activities relating to genealogy and communication with others who had their specific variants. Although there was a desire to find others with the same variant and prevent cancer, more participants expressed an interest in learning about their genealogy and family health history, with prevention in relatives considered a natural side effect of outreach. Concerns about participation included whether relatives would be open to communication, how to go about it, and whether others with a specific variant would be motivated to help find common ancestors. We observed that ConnectMyVariant participants engaged in 6 primary activities to identify and communicate with at-risk relatives: sharing family history, family member testing, direct-to-consumer genealogy genetic testing analysis, contacting (distant) relatives, documentary genealogy, and expanding variant groups or outreach. Participants who connected with others who had the same variant were more likely to engage with several extended family outreach activities. Conclusions This study demonstrated that there is an interest in extended family outreach as a mechanism to improve cascade screening for hereditary cancer prevention. Additional research to systematically evaluate the outcomes of such outreach may be challenging but is warranted.

show abstract

Direct-to-Consumer Genetic Ancestry Testing in Clinical Encounters: Perspectives From Psychotherapy Cases

Cited by 7 publications

References 13 publications

Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

Direct-to-consumer genetic testing: Prospective users’ attitudes toward information about ancestry and biological relationships

Guidelines for genetic ancestry inference created through roundtable discussions

Extended Family Outreach in Hereditary Cancer Using Web-Based Genealogy, Direct-to-Consumer Ancestry Genetics, and Social Media: Mixed Methods Process Evaluation of the ConnectMyVariant Intervention

Contact Info

Product

Resources

About