Genetic exceptionalism and genomic contextualism among Asian Americans: a qualitative study

Views on genetic information - and how it compares to other health information - play a key role in shaping policy surrounding its treatment, management, and communication. Genetic exceptionalism and genomic contextualism are important frameworks to better understand how communities view genetic information in comparison to other medical data. This study aimed to explore how Asian Americans view genetic information and what factors influence their views. Using a qualitative study design guided by reflexive thematic analysis, we interviewed 20 ostensibly healthy Asian American adults about their attitudes toward and experiences with genetic information. We developed four themes: first, participants discussed diverse potential uses and qualities of genetic information that distinguished it from other types of health information, such as providing insight into future health conditions. However, they underscored the continued importance of other types of health information depending on context, and did not view genetic information as deterministic or the essence, giving weight to environmental contributors in molding who they are. Views on genetic information were shaped by complex, interacting factors at individual, family, and community or cultural levels, such as stigma, intersectional identities, and family dynamics. Participants had overall limited awareness of clinical genetics services and indications genetic testing could be offered for, despite high self-reported health literacy. Our participants' views on genetic information were complex and context-dependent, in line with genomic contextualism. This should be considered in providing culturally-engaged genetics education and developing genomics policies that reflect how diverse communities truly feel about genetic information.