What guidance does HIPAA offer to providers considering familial risk notification and cascade genetic testing?
Year: 2020
Type: article
Abstract: BACKGROUND: It is unclear how the Health Insurance Portability and Accountability Act (HIPAA) should be interpreted in the context of sharing of genomic information between family members. METHODS: The authors analyzed the HIPAA Privacy Rule, reviewed the literature and constructed a clinical scenario to inform how HIPAA can be interpreted for multiple forms of patient- and provider-mediated genetic risk notification. RESULTS: Under HIPAA, healthcare providers can lawfully notify relatives to recommend genetic risk assessment using multiple approaches, including supporting the patient telling their own relatives, contacting relatives directly with the patient's authorization, or contacting a relative's provider directly. CONCLUSIONS: Multiple forms of patient- or provider-mediated contact of relatives are already legally permissible under HIPAA, are consistent with ethical obligations of care to patients and their families, and could result in improved population health through identification of clinically actionable disease risk. Unanswered questions remain about implementation and impacts of provider-mediated programs.
DOI: 10.1093/jlb/lsaa071
Institutions: Kaiser Permanente Washington Health Research Institute, Geisinger Health System, The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute, The Ohio State University, Asian Pacific American Institute for Congressional Studies, Washington State Department of Health, Icahn School of Medicine at Mount Sinai, Mayo Clinic, University of Iowa
Language: English
Field: Medicine
Domain: Health Sciences
Open Access status: diamond
OpenAlex ID: W3112809001