The designated record set for clinical genetic and genomic testing: A points to consider statement of the American College of Medical Genetics and Genomics (ACMG)
Genet Med. 2023 Mar;25(3):100342.
doi: 10.1016/j.gim.2022.11.010.
Epub 2022 Dec 22.
1 Indiana University School of Medicine, Indianapolis, IN.
2 Western Michigan University Homer Stryker M.D. School of Medicine, Kalamazoo, MI; GeneDx, Gaithersburg, MD.
3 Division of Medical Genetics, Department of Medicine, University of Washington School of Medicine, Seattle, WA; Department of Bioethics & Humanities, University of Washington School of Medicine, Seattle, WA.
4 Department of Pathology and Laboratory Medicine, University of Kansas Medical Center, Lenexa, KS.
5 Division of Medical Genetics, Marshfield Clinic, Marshfield, WI.
6 Division of Medical Genetics, Department of Pediatrics, Hasbro Children's Hospital, Providence, RI; The Warren Alpert School of Medicine at Brown University, Providence, RI.
7 Department of Genetics, University of North Carolina at Chapel Hill, Chapel Hill, NC.
8 Clinical Genetics Branch, Division of Cancer Epidemiology and Genetics, National Cancer Institute, Rockville, MD.
9 Division of Medical Genetics, Department of Pediatrics, Duke University Medical Center, Durham, NC.
10 Levin College of Law, University of Florida, Gainesville, FL; Herbert Wertheim College of Engineering, University of Florida, Gainesville, FL.
11 American College of Medical Genetics and Genomics, Bethesda, MD.
Keywords:
Designated record set; Health Insurance Portability and Accountability Act of 1996 (HIPAA); Individual access right; Privacy Rule; Protected health information (PHI).
MeSH terms
Confidentiality
Genetics, Medical*
Genomics
Health Insurance Portability and Accountability Act