Date of Award

Spring 2022

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Janice Edwards

Abstract

Consanguinity, defined as the degree of relationship between closely related individuals, is a widespread historical practice that is not specific to any one religion, population, or region of the world. Genetic counselors regularly ask whether a reproductive couple is consanguineous as part of the review of family history and risk assessment. Couples who are in consanguineous relationship may be subject to negative attitudes and stigma, potentially due to cultural differences and norms at a population level and these attitudes may interplay with questions, answers, and discussions around consanguinity. We hypothesized that genetic counselors may experience some level of discomfort discussing and responding to patients when inquiring about consanguinity due to cultural stigma and misconceptions of genetic risks associated with consanguinity. We aimed to gain an understanding of strategies genetic counselors used to discuss consanguinity. Over 140 genetic counselors from 15 various specialties, with years of experience ranging from 2 to 35 years, and from 16 countries responded to a survey exploring experiences with consanguinity to understand strategies used in clinical practice. Overall, the study found that most genetic counselors feel comfortable counseling on consanguinity and there is great variation in how genetic counselors ask about consanguinity, how genetic counselors initially react when consanguinity is disclosed, and methods used to address patient discomfort. Counselors who report more experience with consanguineous couples were more easily able to educate patients and respond properly to their reactions than those with lesser experience. Additionally, 10% of respondents disclosed history of consanguinity within their own families and shared experiences with attitudes of colleagues and others, some of which included apparently biased interactions. Given the multiple perspectives of genetic counselors represented and their experience in discussing consanguinity, we can infer from this study that the way a genetic counselor intentionally asks and responds to this question has impact. The genetic counselor can create the opportunity to ask without prejudice and is uniquely positioned to educate patients and others about accurate risk assessment among consanguineous couples. This study also supports the importance that healthcare providers, particularly genetic counselors, continue to reflect on personal thoughts, feelings, and potential biases related to consanguinity as we serve others with acceptance.

Rights

© 2022, Romy Isabel Fawaz

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