Direct‐to‐consumer genetic testing companies tell their customers to ‘see a genetic counselor'. How do genetic counselors feel about direct‐to‐consumer genetic testing?

Hsieh, Vicky; Braid, Tamara; Gordon, Erynn S.; Hercher, Laura

doi:10.1002/jgc4.1310

Cited by 17 publications

(52 citation statements)

References 13 publications

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“…Fourth, discussions about health risks were less common but focused primarily on submitting DTC-GT generated raw data to third parties for interpretation. Given the level of concern among health care providers about DTC health-related results [22,24,58] and the many studies of individuals' views about these tests [59,60], the level of spontaneous discussion of the test results offered by 23andMe was surprisingly low even after 2017 when that company was once again permitted to offer them. This may be attributable to the limited panel of healthrelated results offered by 23andMe, most of which are relatively uncommon, so that most discussants would not have received a concerning result.…”

Section: Plos Onementioning

confidence: 99%

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions

et al. 2020

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Background Millions of people have undergone direct-to-consumer genetic testing (DTC-GT), but little is known about individuals' motivations and experiences (e.g., discussion topics and emotions after obtaining the test results) in engaging with DTC-GT services. Previous studies either involved only a small number of DTC-GT consumers or were based on hypothetical scenarios. Objective Our study aimed to fill this gap by investigating online discussions about DTC-GT that developed naturally among tens of thousands of social media users. Methods We focused on the posts that were published in the r/23andme and r/AncestryDNA subreddits, which correspond to the two companies with the largest number of consumers in the DTC-GT market. We applied computational methods to infer and examine the topics discussed, temporal trends in posting rates and themes (e.g., aggregation of related topics), and emotions expressed in these online forums. Results We collected 157,000 posts published by 16,500 Reddit users between 2013 and 2019. We found that the posting rates increased sharply after popular promotional events (e.g., each Amazon Prime Day and Black Friday) and most posts were inquiries into, or status updates about, testing progress. The inferred themes of Ancestral Origin and Kinship/Feelings were

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Section: Plos Onementioning

confidence: 99%

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions

et al. 2020

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“…While GCs who participated in our study are unified in their practice of ordering confirmatory testing, the selected clinical-grade test varies depending on the proband's cancer history and whether the report was through DTC-GT or TPI services. Prior studies have shown that GCs may not believe they have the professional obligation to be knowledgeable about DTC-GT or feel comfortable interpreting these results (Brett et al, 2012;Hock et al, 2011;Hsieh et al, 2020). Given that the majority of participants in our study believed that it would be easy to provide counseling related to DTC-GT, it appears that GCs have made strides in educating themselves on this topic.…”

Section: Practice Implicationsmentioning

confidence: 78%

“…The findings of a recent study by Hsieh et al (2020) suggest that the majority of genetic counselors have negative attitudes toward DTC-GT, may not believe that these type of results are accurate, and do not think it is appropriate to offer DTC-GT for hereditary cancer predisposition.…”

Section: What Is Known About This Topicmentioning

confidence: 99%

“…However, most PCPs report a lack of knowledge regarding DTC-GT reports (Carroll et al, 2016;Powell et al, 2012). Whereas genetic counselors (GCs) may be the most capable provider to bridge the gap between patients and their DTC-GT result and/or TPI data given their training and skillset, the findings of a recent study by Hsieh et al (2020) may suggest otherwise. Approximately 40% of surveyed GCs reported that they do not feel comfortable providing counseling on DTC-GT results.…”

Section: Introductionmentioning

confidence: 99%

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Genetic counselor approaches to BRCA1/2 direct‐to‐consumer genetic testing results

Burke

Mork

Qualmann

et al. 2021

Journal of Genetic Counseling

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The National Comprehensive Cancer Network recommends clinical-grade genetic testing to confirm commercial results from direct-to-consumer genetic testing (DTC-GT) companies and third-party interpretation (TPI) services; however, the type of confirmatory testing that genetic counselors (GCs) recommend remains uncharacterized. Therefore, we aimed to describe GCs testing strategies for patients who have already obtained DTC-GT results (23andMe) or TPI data (Promethease) that reported a BRCA1/2 pathogenic variant. We invited GCs specializing in clinical cancer genetics to complete an online survey distributed to members of the National Society of Genetic Counselors. The survey, completed by 80 respondents, contained case scenarios featuring probands with variable personal and family histories of cancer. Our results show that the majority of participating GCs have counseled patients for their health-related commercial test results; 94% have encountered patient DTC-GT reports (3 per year), and 69% have encountered patient TPI data (2 per year). Most participating GCs would recommend confirmatory clinical-grade testing for probands with a positive 23andMe BRCA1/2 result (77/80, 96%). However, there was strong variability between the type of recommended testing. Approximately 20% recommended singlesite analysis, 11%-14% recommended the three Ashkenazi Jewish BRCA1/2 founder mutations, 4% recommended BRCA1/2 testing, and 61%-64% recommended multigene panel testing. The most commonly recommended panels were split between a breast and gynecological cancer-focused panel and a broad pan-cancer panel. The majority of participants (98%-100%) would also recommend confirmatory testing for patients with positive TPI data for BRCA1/2. Similarly, results were mixed between those who recommended targeted, single-site analysis (10%-15%) compared to a multi-gene panel (72%-83%). These data show that while most GCs were uniform in their practice of recommending confirmatory testing, they are mixed in their approach to the specific type of testing they would select. These results may help inform counseling approaches and consensus for this expanding group of patients.

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“…The introduction of DTC testing brought a new category of patients to the medical genetics clinic: individuals seeking genetic counseling services following DTC testing. One study that interviewed practicing genetic counselors in 2016 and 2017 demonstrated that nearly half (40.1%) of surveyed genetic counselors had seen at least one patient for the sole indication of reviewing DTC testing results (41), an increase from the 11% reported in similar studies conducted in 2011 (17). Both the NSGC and the American College of Medical Genetics and Genomics issued position statements on the importance of the availability of genetic counselors to consumers undergoing DTC testing (9,10,61).…”

Section: Roles Of Genetic Counselors In Direct-to-consumer Testingmentioning

confidence: 99%

Scaling Genetic Counseling in the Genomics Era

Amendola

Golden‐Grant

Scollon

2021

Annu. Rev. Genom. Hum. Genet.

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The development of massively parallel sequencing–based genomic sequencing tests has increased genetic test availability and access. The field and practice of genetic counseling have adapted in response to this paradigm-shifting technology and the subsequent transition to practicing genomic medicine. While the key elements defining genetic counseling remain relevant, genetic counseling service delivery models and practice settings have evolved. Genetic counselors are addressing the challenges of direct-to-consumer and consumer-driven genetic testing, and genetic counseling training programs are responding to the ongoing increased demand for genetic counseling services across a broadening range of contexts. The need to diversify both the patient and participant groups with access to genetic information, as well as the field of genetic counseling, is at the forefront of research and training program initiatives. Genetic counselors are key stakeholders in the genomics era, and their contributions are essential to effectively and equitably deliver precision medicine. Expected final online publication date for the Annual Review of Genomics and Human Genetics Volume 22 is August 2021. Please see http://www.annualreviews.org/page/journal/pubdates for revised estimates.

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Direct‐to‐consumer genetic testing companies tell their customers to ‘see a genetic counselor'. How do genetic counselors feel about direct‐to‐consumer genetic testing?

Cited by 17 publications

References 13 publications

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions

Health and kinship matter: Learning about direct-to-consumer genetic testing user experiences via online discussions

Genetic counselor approaches to BRCA1/2 direct‐to‐consumer genetic testing results

Scaling Genetic Counseling in the Genomics Era

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