A Systematic Review of Conceptualization of Trust in Precision Medicine Research from Historically Underserved Racial and Ethnic Groups and Populations with Disabilities
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Authors
Kim, Chanyong Tina
Suresh, Revathy
Issue Date
2022-05-01
Type
thesis_campus
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Keywords
Precision Medicine Research , Trust , Underserved Populations , Disability , Racial and Ethnic Marginalized Groups , Precision Medicine , Disability Studies
Medicine and Health
Race and Ethnicity
Alternative Title
Human Genetics Theses
Abstract
Precision Medicine Research (PMR) presents an exciting frontier in biomedical research incorporating genomic, environmental, and lifestyle data into individualized care. Historically underserved racial and ethnic groups are underrepresented in PMR data, and individuals with disabilities are even less represented and remain understudied. Trust is known to be a key factor influencing participation in clinical research. Known categories of trust include Experiences in Healthcare, Individual and Group Harm, Patient-Provider/ Participant-Researcher Relationship, Discrimination, and Accessibility. In this systematic review, six databases (PubMed, ProQuest, Disability and Health, Disability and Rehabilitation, Disability and Society, and Disability Studies Quarterly) were searched with the Boolean string "precision medicine research AND (trust* OR disab*)", and deductively coded for the above categories across a total of forty-two articles, twenty-three of which were empirical and nineteen of which were conceptual. Three new categories emerged through inductive coding: Advances in Technology, Inequitable Profit, and Religion and Culture. Results indicated the paucity of research at the intersection of disability and PMR, with only four of forty-two articles including individuals with disabilities as participants or addressing them. Nonetheless, the reviewed literature on individuals with disabilities' attitudes and perceptions of trust in biomedical research including PMR demonstrated some overlap with attitudes and perceptions from historically underserved racial and ethnic groups. As advocates and clinical communicators, genetic counselors are equipped with the appropriate skill set to address concerns in trustworthiness of PMR.
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