2019
Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research
Kim J, Kim H, Bell E, Bath T, Paul P, Pham A, Jiang X, Zheng K, Ohno-Machado L. Patient Perspectives About Decisions to Share Medical Data and Biospecimens for Research. JAMA Network Open 2019, 2: e199550. PMID: 31433479, PMCID: PMC6707015, DOI: 10.1001/jamanetworkopen.2019.9550.Peer-Reviewed Original Research
2016
Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States
Wang S, Jiang X, Singh S, Marmor R, Bonomi L, Fox D, Dow M, Ohno‐Machado L. Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States. Annals Of The New York Academy Of Sciences 2016, 1387: 73-83. PMID: 27681358, PMCID: PMC5266631, DOI: 10.1111/nyas.13259.Peer-Reviewed Reviews, Practice Guidelines, Standards, and Consensus StatementsConceptsData privacySensitive individual informationComputer science communityReal-world problemsUnauthorized partiesHuman genomic dataPrivacy breachesData accessData sharingData accessibilityConfidentiality protectionGenomic dataSpectrum of techniquesIndividual informationPrivacyScience communityPhenotype informationTechnical approachPotential solutionsCurrent common practiceBiomedical researchResearch purposesConfidentialityInformationSharingBiospecimen Sharing Among Hispanic Women in a Safety-Net Clinic: Implications for the Precision Medicine Initiative
Nodora J, Komenaka I, Bouton M, Ohno-Machado L, Schwab R, Kim H, Farcas C, Perez G, Martinez M. Biospecimen Sharing Among Hispanic Women in a Safety-Net Clinic: Implications for the Precision Medicine Initiative. Journal Of The National Cancer Institute 2016, 109: djw201. PMID: 27688295, PMCID: PMC5040829, DOI: 10.1093/jnci/djw201.Peer-Reviewed Original ResearchConceptsSafety-net clinicsPrecision Medicine InitiativeHispanic womenUnderserved populationsMedicine InitiativeSafety-net hospitalUS Hispanic populationPatient's physicianIndividualized careConsent ratesBreast biopsyBiospecimen donationHispanic populationClinicHospitalResearch assistantsPhysiciansWomenPersonalized medicineBiospecimenPopulationBiopsyiCONCUR: informed consent for clinical data and bio-sample use for research
Kim H, Bell E, Kim J, Sitapati A, Ramsdell J, Farcas C, Friedman D, Feupe S, Ohno-Machado L. iCONCUR: informed consent for clinical data and bio-sample use for research. Journal Of The American Medical Informatics Association 2016, 24: 380-387. PMID: 27589942, PMCID: PMC5391727, DOI: 10.1093/jamia/ocw115.Peer-Reviewed Original ResearchConceptsPatient preferencesClinical dataHuman immunodeficiency virus clinicInternal medicine clinicElectronic health record dataHealth record dataAcademic medical centerElectronic health recordsDe-identified dataOutpatient clinicMedicine clinicFamily historyMedical CenterInformed Consent ToolClinical settingClinicHealth recordsRecord dataInformed consent systemPatientsConsent toolRecipientsConsentE-consentParticipants