Genetics healthcare providers' experiences counseling patients with results from consumer genomic testing.
Magan Trottier, Dina Green, Hannah Ovadia, Amanda Catchings, Julia Gruberg, Victoria Groner, Catherine Fanjoy, Sita Dandiker, Kathleen Blazer, Jada G Hamilton, Kenneth Offit
Author Information
Magan Trottier: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
Dina Green: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
Hannah Ovadia: Department of Psychiatry & Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
Amanda Catchings: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
Julia Gruberg: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
Victoria Groner: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
Catherine Fanjoy: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
Sita Dandiker: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
Kathleen Blazer: Division of Clinical Cancer Genomics, City of Hope Comprehensive Cancer Center, Duarte, Los Angeles, USA.
Jada G Hamilton: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA. ORCID
Kenneth Offit: Department of Medicine, Memorial Sloan Kettering Cancer Center, New York City, New York, USA.
BACKGROUND: Consumer genomic testing (CGT), including direct-to-consumer and consumer-initiated testing, is increasingly widespread yet has limited regulatory oversight. To assess the current state, we surveyed genetics healthcare providers' experiences with CGT. METHODS: A retrospective survey about experiences counseling on CGT results was completed by 139 respondents recruited from the National Society of Genetic Counselors, Clinical Cancer Genomics Community of Practice, and genetics professional societies. RESULTS: Among respondents, 41% disagreed with the statement that potential benefits of CGT outweigh harms, 21% agreed, and 38% were undecided. A total of 94% encountered ���1 challenge counseling CGT patients, including adverse psychosocial events (76%), incorrect variant interpretation (68%), and unconfirmed results (69%); unconfirmed results were more common among oncology providers (p���=���0.03). Providers reporting higher total challenge scores (p���=���0.004) or more psychosocial or interpretation challenges (p���������0.01) were more likely to indicate CGT harms outweigh benefits. Those with higher CGT clinical volume were more likely to indicate benefits outweigh harms (p���=���0.003). Additional CGT challenges included patient understanding and communication of results, false negatives, incorrect testing/care, and financial costs; seven respondents (6%) documented positive outcomes. CONCLUSION: Providers counseling CGT patients encounter psychosocial and medical challenges. Collaborations between regulators, CGT laboratories, providers, and consumers may help mitigate risks.
