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Experiences and Expectations of Clients Who Sought Genetic Consultation for Direct-to-Consumer Genetic Testing Data

  • Author(s): Wong, Allison Elizabeth
  • Advisor(s): Hopfer, Suellen
  • et al.

Direct-to-consumer genetic testing (DTCGT) has captured the attention of many people across the United States. Although much of the information provided can be categorized as “info-tainment”, DTCGT companies also report on genetic information previously only obtainable in a clinical setting. Because of this, some consumers have sought clarification from genetic counselors who have specialized knowledge interpreting DTCGT results. As the popularity of SNP-based testing, as well as whole-exome and whole-genome sequencing, grows, so will the number of people who contact these specialized providers. However, there are limited data on the experiences and expectations of this population for counselors to draw on as they develop and grow their practices.

This study utilized semi-structured interviews of eight clients and one genetic counselor who conducts consultations for DTCGT data to provide in-depth description of consumers’ journeys with their DTCGT information. Interviews focused on how informant expectations were or were not met throughout the process and what they took away from the genetic consultation. Qualitative data analysis guided by expectancy violation theory allowed for rich, explorative reporting of this unique population. Themes of seeking information, frustration, questioning, hopefulness, and satisfaction emerged from the interviews and were described in the context of either motivations and expectations or reflections. In line with the desire for concrete information, informants expressed frustration that genetic research often could not provide the answers they desired. Nonetheless, clients reported high satisfaction with the genetic consultation even though it was common for their expectations of the session to be left unfulfilled. Informants expressed more nuanced understandings of their results and many sought additional DTCGT services following the consultation. Informants continue to have concerns about the privacy of genetic information but hope and excitement for the future of genetics prevails as they continue to interact with their data. Accounts from these respondents provide genetic counselors working in this space with insights into client experiences with their DTCGT results. These findings also highlight the continued need for broader genetics education for both the general public and healthcare providers not trained in genetics.

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