PROJECT NARRATIVE Using an innovative multi-stakeholder approach, this study will contribute essential and timely data, new methods, and ethical analyses to first investigate stakeholders’ (i.e., social and behavioral genomics (SBG) researchers, journal editors, journalists, members of industry, parents, and K-12 educators) roles in the conduct and translation of SBG and their perspectives on SBG’s downstream harms/benefits.
PROJECT NARRATIVE The recent explosion in biobanking, more routine collection of data on gender identity, and rapid expansion of research in transgender and gender diverse (TGD) populations has afforded both an opportunity to study whether gender identity has genetic underpinnings, and a time sensitive need to inform how such research is used to benefit and not harm TGD populations.
The proposed research will examine primary care physicians’ attitudes and beliefs about genetic causes of obesity in Black and White patients, as well as perceptions among Black and White adults with obesity of physicians who endorse genetic explanations of obesity, using a cross- sectional survey, experimental social science methodology, and qualitative focus-groups.
NARRATIVE / PUBLIC HEALTH RELEVANCE STATEMENT The Community Engagement Core (CEC) will provide the oversight needed to ensure the U54 Pacific Center for Genome Research (PCGR)’s consideration of equity and ethics in the examination of genetic and other risk factors across the underserved and ethnic minority groups, including Native Hawaiians (NHs), Africans, Latinos, Asians, and Europeans served by this research. The CEC will broadly engage these populations and their providers to increase their awareness of genetic and omic risks for disease and obtain their input on our research.
Project Narrative Racial/ethnic disparities in genomic testing and research participation threaten to exacerbate inequities in health outcomes, particularly in pediatrics.3-7 Given that current genomic privacy mechanisms (e.g., de-identification, broad consent) do not adequately address the concerns of historically disadvantaged populations related to genomic testing and research,1-3 there is an urgent need to understand the range of perspectives on genomic data privacy held by parents from diverse sociodemographic backgrounds.
PROJECT NARRATIVE Cloud computing promises to scale up storage, analysis and sharing of health data needed to accelerate research in genomics and precision medicine but methods for evaluating how responsible access to and sharing of genomic data is governed in the cloud remain severely underdeveloped. The proposed K01 aims to develop, validate, and implement a reliable tool in partnership with global stakeholders to assess genomic data stewardship across publicly funded repositories worldwide.
PROJECT NARRATIVE If healthy babies are sequenced near birth, when should genetic information relevant to later stages of their lives be revealed? There are different possible strategies for when this genomic information is revealed, and this research will determine their clinical feasibility, analyze their ethical, legal and social implications, understand diverse parents' preferences, and seek consensus on the necessary and desirable features of a strategy.
PROJECT NARRATIVE This study aims to investigate facilitators and barriers to long-term equitable partnerships in genomics research between communities and research institutions. We focus on legal and organizational infrastructures and practices that shape how decisions are made, by whom, and with what consequences, and changes that can support innovative and transformative approaches to equity, benefit and justice.
PROJECT NARRATIVE Genetic testing is increasingly used in ill neonates and holds promise to improve care, but the uncertainty of many genetic results complicates their application to clinical practice and poses an important hazard. Uncertainty can lead both clinicians and parents to misunderstand or misapply findings, resulting in biased treatment plans.