Health equity innovation in precision medicine: data stewardship and agency to expand representation in clinicogenomics.

Autor: Silva PJ; Texas A&M Health, School of Medicine, Health Professions Education Building 8447 Riverside Pkwy, Bryan, TX, 77807, United States of America. ricksilva@tamu.edu.; Texas A&M Institute for Bioscience and Technology, 2121 W. Holcombe Blvd, Houston, TX, 77030, United States of America. ricksilva@tamu.edu., Rahimzadeh V; Baylor College of Medicine, 1 Baylor Plz, Houston, TX, 77030, United States of America., Powell R; Texas A&M Health, School of Medicine, Health Professions Education Building 8447 Riverside Pkwy, Bryan, TX, 77807, United States of America.; Texas A&M Institute for Bioscience and Technology, 2121 W. Holcombe Blvd, Houston, TX, 77030, United States of America., Husain J; Greater Houston Healthconnect, 1200 Binz St Suite 1495, Houston, TX, 77004, United States of America., Grossman S; Merck and Co., 126 East Lincoln Avenue, Rahway, NJ, 07065, United States of America., Hansen A; Geneial, Houston, TX, United States of America., Hinkel J; The Data Economics Company, Los Angeles, CA, 90064, United States of America., Rosengarten R; Genialis, 2726 Bissonnet St Suite 240-374, Houston, TX, 77005, United States of America.; Alliance for Artificial Intelligence in Healthcare, 1340 Smith Ave #400, Baltimore, MD, 21209, United States of America., Ory MG; Department of Environmental and Occupational Health, Center for Population Health and Aging, Texas A&M University School of Public Health, 212 Adriance Lab Rd, College Station, TX, 77843, United States of America., Ramos KS; Texas A&M Health, School of Medicine, Health Professions Education Building 8447 Riverside Pkwy, Bryan, TX, 77807, United States of America. Kramos@tamu.edu.; Texas A&M Institute for Bioscience and Technology, 2121 W. Holcombe Blvd, Houston, TX, 77030, United States of America. Kramos@tamu.edu.; Texas A&M System, 301 Tarrow St, College Station, TX, 77840, United States of America. Kramos@tamu.edu.
Jazyk: angličtina
Zdroj: Health research policy and systems [Health Res Policy Syst] 2024 Dec 19; Vol. 22 (1), pp. 170. Date of Electronic Publication: 2024 Dec 19.
DOI: 10.1186/s12961-024-01258-9
Abstrakt: Most forms of clinical research examine a very minute cross section of the patient journey. Much of the knowledge and evidence base driving current genomic medicine practice entails blind spots arising from underrepresentation and lack of research participation in clinicogenomic databases. The flaws are perpetuated in AI models and clinical practice guidelines that reflect the lack of diversity in data being used. Participation in clinical research and biobanks is impeded in many populations due to a variety of factors that include knowledge, trust, healthcare access, administrative barriers, and technology gaps. A recent symposium brought industry, clinical, and research participants in clinicogenomics to discuss practical challenges and potential for new data sharing models that are patient centric and federated in nature and can address health disparities that might be perpetuated by lack of diversity in clinicogenomic research, biobanks, and datasets. Clinical data governance was recognized as a multiagent problem, and governance practices need to be more patient centric to address most barriers. Digital tools that preserve privacy, document provenance, and enable the management of data as intellectual property have great promise. Policy updates realigning and rationalizing clinical data governance practices are warranted.
Competing Interests: Declarations. Ethics approval and consent to participate: Not applicable. Competing interests: RR is an executive and employee of Genialis; AH is an executive and employee of Geneial; SG is an executive and employee of Merck & Co; JH is an executive and employee of The Data Economics Company; all for profit corporations. Genentech financially supported this project. All other organization involved are non-profits.
(© 2024. The Author(s).)
Databáze: MEDLINE
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