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How Has the Rise of Direct-To-Consumer Genetic Testing Impacted Genetic Counselling Practice? A Scoping Review
Cushla McKinney1, Giselle Newton2, Vaishnavi Nathan3
1Graduate School of Health, University of Technology Sydney, Ultimo, New South Wales, Australia.
Abstract:
Direct to consumer genetic testing (DTC-GT) has expanded exponentially in the past decade, but little is known about Genetic Health Practitioners' (GHPs') experience with, attitudes towards, and capacity to support DTC-GT consumers. This scoping review aimed to consolidate empirical research to understand GHP and consumer needs and identify knowledge gaps. Forty-four publications from 2007 to 2025 covering GHP attitudes towards DTC-GT and GHP/consumer experiences of counselling (n = 30); company provision of counselling (n = 12); and counsellor-designed tools for DTC-GT consumers (n = 2) were reviewed. Of studies reporting GHP attitudes and experiences, the majority (82%) focused on GHPs in clinical settings. GHPs considered counselling necessary for informed consent and result interpretation, but felt this was outside their professional responsibilities, wanted additional resources and clearer practice guidelines. Despite considering counselling the responsibility of the DTC-GT companies, many GHPs were concerned about inherent conflicts of interest and wanted greater industry oversight and regulation. Little literature on the extent of company-provided counselling (n = 12) was identified, and none on quality. This review highlights the need to clarify the roles and scope of GHPs in clinical practice regarding DTC-GT, to develop best-practice models, and for more research on the nature and efficacy of counselling by GHPs in company and non-clinical settings.
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