Choices, attitudes, and experiences of genetic screening in Latino/a and Ashkenazi Jewish individuals
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ORIGINAL ARTICLE
Choices, attitudes, and experiences of genetic screening in Latino/a and Ashkenazi Jewish individuals Anne E. Reed-Weston 1 & Aileen Espinal 2 & Bianca Hasar 2 & Codruta Chiuzan 3 & Gabriel Lazarin 4 & Chunhua Weng 5 & Paul S. Appelbaum 6 & Wendy K. Chung 2,7 & Julia Wynn 2 Received: 13 November 2019 / Accepted: 21 April 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
Abstract Genetic screening to inform personal risk has only recently become an option as the cost of sequencing decreases, and our ability to interpret sequence variants improves. Studies have demonstrated that people want to learn about their genetic information and do well after learning it, but minorities are underrepresented in these studies. We surveyed Ashkenazi Jewish (AJ) and Latino/a participants in a genetic screening study to solicit choices about genetic results to return, as well as their experience with learning these results and attitudes about genetic information secrecy and security. Participants had the option to proceed through the study self-guided, and few elected to have traditional pre-test genetic education and counseling. Despite this, the majority were satisfied with the process of selecting and receiving genetic results and felt that they understood their results. Concerns about privacy and confidentiality of genetic data were minimal, though some participants expressed modest concerns about keeping any potential results secret or the confidentiality of their genetic information. Our results support the feasibility of the option of self-guided genetic screening. Additional care will need to be taken when designing population-based screening studies to meet the needs of participants who come from communities with different experiences with genetics.
Introduction Genetic screening of healthy individuals for personal disease risk or carrier screening for reproductive genetic risk can be used to provide healthcare guidance. Carrier screening, which provides information about the risk to have a child affected with a genetic condition, is endorsed by the American College of Obstetricians and Gynecologists (ACOG) (Committee on Genetics et al. 2017) and American College of Medical Genetics and Genomics (ACMG) (Grody et al. 2013) and is commonly offered in clinical practice (Hallam et al. 2014;
Peyser et al. 2018). However, genetic screening of healthy individuals to identify personal disease risk in asymptomatic people is less common and is typically limited to individuals with a relevant family history. Genetic screening to inform personal disease risk has only recently become an option as the cost of sequencing decreases and our ability to interpret variants improves (Bowdin et al. 2016). While recent evidence suggests that genetic screening in specific circumstances and populations (i.e., those with a family history) may be cost-effective (Catchpool et al. 2019; Sun et al. 2019), the medical utility and economic benefits of
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