Center for Medical Ethics and Health Policy Staff Publications
Language
English
Publication Date
12-19-2024
Journal
Health Research Policy and Systems
DOI
10.1186/s12961-024-01258-9
PMID
39695714
PMCID
PMC11657299
PubMedCentral® Posted Date
12-19-2024
PubMedCentral® Full Text Version
Post-print
Abstract
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.
Keywords
Humans, Biological Specimen Banks, Biomedical Research, Genomics, Health Equity, Information Dissemination, Intellectual Property, Precision Medicine, Health equity, Precision medicine, Clinicogenomic registries, Data infrastructure, Interoperability
Published Open-Access
yes
Recommended Citation
Silva, Patrick J; Rahimzadeh, Vasiliki; Powell, Reid; et al., "Health Equity Innovation in Precision Medicine: Data Stewardship and Agency To Expand Representation in Clinicogenomics" (2024). Center for Medical Ethics and Health Policy Staff Publications. 319.
https://digitalcommons.library.tmc.edu/med_ethics/319