Trust, Stigma, and Participation in Genomic Medicine and Research

Genomic medicine promises more precise diagnosis, prevention, and treatment, yet its benefits depend on who agrees to take part. Hesitancy to participate exists across clinical and research contexts, including population screening, newly emerging mRNA vaccines, and clinical and pharmaco- genetic testing for the purpose of implementing treatments such as those for cancer and opioid use disorder; as well as research contexts such as biobanking and data repositories. Often, uptake is shaped less by the technology itself than by trust. Persistent mistrust, rooted in histories of discrimination, unequal care, and misuse of data, together with stigma attached to certain conditions and communities and the belief that genetic testing might identify one as likely to manifest these conditions, continues to depress participation among the very groups who stand to gain most. The result is a widening gap between what genomic science can offer and who actually benefits, raising pressing ethical, legal, and social questions about privacy, equity, consent, and justice.This Research Topic examines how trust, mistrust, and stigma influence engagement with genomic medicine and research, and what can be done to build more equitable and trustworthy systems. We welcome empirical, conceptual, and policy-oriented contributions that address, among others:o Trust and mistrust in biobanking, genomic research participation, and data sharing, including the role of historical injustice and lived experience;o Community-based participatory and community-engaged approaches as mechanisms for building sustainable, bidirectional trust between researchers and underrepresented populationso Stigma and its effects on screening, testing, and treatment uptake, for example in reproductive screening, infectious disease and vaccination, or opioid use disorder care;o Consent, privacy, and the return of results, and how these shape perceptions of trustworthiness;By bringing together perspectives from bioethics, law, public health, social science, and clinical genomics, this Topic aims to inform trustworthy, culturally sensitive, and just approaches to genomic medicine and research. This Topic centers on the psychosocial, relational, and historical drivers of trust and mistrust. Submissions primarily focused on developing or evaluating anti-racist, decolonial, or structural frameworks for genomic data governance, diversifying reference cohorts, or mitigating algorithmic bias are invited to submit instead to the Research Topic, “Dismantling Inequity in Genomics: Implementing Anti-Racist Frameworks and Health Equity Strategies in Clinical Genetics and Research”. Topic editors: Thomas May, Mariko Nakano-Okuno Source: https://www.frontiersin.org/research-topics/85728/trust-stigma-and-participation-in-genomic-medicine-and-research