{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,11]],"date-time":"2026-09-11T19:24:40Z","timestamp":1789154680843,"version":"build-2803163510"},"reference-count":81,"publisher":"Cambridge University Press (CUP)","issue":"3","license":[{"start":{"date-parts":[[2021,1,1]],"date-time":"2021-01-01T00:00:00Z","timestamp":1609459200000},"content-version":"unspecified","delay-in-days":2192,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J. Law. Med. Ethics"],"published-print":{"date-parts":[[2015]]},"abstract":"<jats:p>The debate about how to manage individual research results and incidental findings in genetic and genomic research has focused primarily on what information, if any, to offer back to research participants. However, increasing controversy surrounds the question of whether researchers have any responsibility to offer a participant\u2019s results (defined here to include both individual research results and incidental findings) to the participant\u2019s relatives, including after the participant\u2019s death. This question arises in multiple contexts, including when researchers discover a result with potentially important health implications for genetic relatives, when a participant\u2019s relatives ask a researcher whether any research results about the participant have implications for their own health or reproductive planning, when a participant\u2019s relative asks whether any of the participant\u2019s results have implications for a child\u2019s health, and when the participant is deceased and the participant\u2019s relatives seek information about the participant\u2019s genetic results in order to address their own health or reproductive concerns.<\/jats:p>","DOI":"10.1111\/jlme.12288","type":"journal-article","created":{"date-parts":[[2021,1,25]],"date-time":"2021-01-25T02:53:44Z","timestamp":1611543224000},"page":"440-463","source":"Crossref","is-referenced-by-count":75,"title":["Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations"],"prefix":"10.1017","volume":"43","author":[{"given":"Susan M.","family":"Wolf","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rebecca","family":"Branum","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Barbara A.","family":"Koenig","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gloria M.","family":"Petersen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan A.","family":"Berry","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Laura M.","family":"Beskow","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary B.","family":"Daly","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Conrad V.","family":"Fernandez","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert C.","family":"Green","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bonnie S.","family":"LeRoy","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Noralane M.","family":"Lindor","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"P. Pearl","family":"O'Rourke","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carmen Radecki","family":"Breitkopf","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark A.","family":"Rothstein","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brian","family":"Van Ness","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Benjamin S.","family":"Wilfond","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"56","published-online":{"date-parts":[[2021,1,1]]},"reference":[{"key":"S1073110500019380_bib39","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.12034"},{"key":"S1073110500019380_bib69","doi-asserted-by":"publisher","DOI":"10.1093\/acprof:oso\/9780199974566.001.0001"},{"key":"S1073110500019380_bib6","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2011.67"},{"key":"S1073110500019380_bib54","unstructured":"54. Tarasoff v. Regents of the University of California, 17 Cal. 3d 425 (Cal. 1976)."},{"key":"S1073110500019380_bib17","first-page":"123","article-title":"\u201cPrivacy and Health Information Technology,\u201d","volume":"37","author":"McGraw","year":"2014","journal-title":"Journal of Law, Medicine and Ethics"},{"key":"S1073110500019380_bib67","unstructured":"67. Burke, , supra note 5; Bledsoe, , supra note 50, at 104."},{"key":"S1073110500019380_bib43","unstructured":"43. Woodward v. Commissioner of Social Security, 760 N.E.2d 257 (Mass. 2002); Hecht v. Superior Court, 20 Cal. Rptr.2d 275 (Cal. Ct. App. 1993)."},{"key":"S1073110500019380_bib4","doi-asserted-by":"publisher","DOI":"10.1001\/jama.292.12.1469"},{"key":"S1073110500019380_bib63","unstructured":"63. For discussion of different oversight models for return of results issues, including an Informed Cohort Oversight Board (ICOB) and a Return of Results Oversight Committee, see, e.g., Wolf, (2012), supra note 1, at 374, and sources cited therein."},{"key":"S1073110500019380_bib46","doi-asserted-by":"publisher","DOI":"10.1086\/292226"},{"key":"S1073110500019380_bib36","unstructured":"36. Peters, , supra note 35, at 453."},{"key":"S1073110500019380_bib12","unstructured":"12. See, e.g., Mercy College, HIPAA & Research: What Do I Need to Know? available at <https:\/\/legacyweb.mercy.edu\/my-mercy\/faculty-resources\/institutional-review-board\/application-guidelines\/hipaa-research-what-do-i-need-to-know\/> (last visited September 1, 2015)."},{"key":"S1073110500019380_bib61","unstructured":"61. Fullerton, , supra note 2; Garrett, , supra note 5, at 161."},{"key":"S1073110500019380_bib50","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2012.105"},{"key":"S1073110500019380_bib7","doi-asserted-by":"crossref","first-page":"294","DOI":"10.1038\/gim.2013.137","article-title":"\u201cCommunication of Genetic Test Results to Family and Health-Care Providers Following Disclosure of Research Results,\u201d","volume":"16","author":"Graves","year":"2014","journal-title":"Genetics in Medicine"},{"key":"S1073110500019380_bib53","unstructured":"53. Wolf, (2012), supra note 1, at 373; Fabsitz, , supra note 1, at 575."},{"key":"S1073110500019380_bib10","unstructured":"10. See, e.g., Breitkopf, Radecki , supra note 8."},{"key":"S1073110500019380_bib68","unstructured":"68. Rothstein, , supra note 21, at 528."},{"key":"S1073110500019380_bib48","unstructured":"48. American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure, supra note 4, at 474."},{"key":"S1073110500019380_bib66","unstructured":"66. Chan, , supra note 2, at 7. Note that individual research studies may decide to experiment with active return to family for the purpose of collecting data on that practice."},{"key":"S1073110500019380_bib57","unstructured":"57. See Clayton, , supra note 3, at 383."},{"key":"S1073110500019380_bib22","unstructured":"22. 45 C.F.R. \u00a7 164.502 (g) (2014). See also DHHS, Personal Representatives, supra note 15. Note that once the research participant is deceased, the PR for the decedent will generally have broad authority over health information even if there was no specific grant of authority over health decisions. See id."},{"key":"S1073110500019380_bib62","unstructured":"62. NCI Best Practices 2011, supra note 2, at 38."},{"key":"S1073110500019380_bib24","unstructured":"24. South Carolina Statutes \u00a7 38-93-40 (2014). For a compendium of state genetic privacy statutes, see National Human Genome Research Institute (NHGRI), Genome Statute and Legislation Database, available at <https:\/\/www.genome.gov\/PolicyEthics\/LegDatabase\/pubsearch.cfm> (last visited September 1, 2015)."},{"key":"S1073110500019380_bib38","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2008.154096"},{"key":"S1073110500019380_bib70","doi-asserted-by":"publisher","DOI":"10.1111\/pai.12087"},{"key":"S1073110500019380_bib52","unstructured":"52. Wolf, (2012), supra note 1, at 373; Fabsitz, , supra note 1, at 575\u2013576, 580."},{"key":"S1073110500019380_bib59","unstructured":"59. Beskow, Burke, , supra note 6. See also Shah, , supra note 55; Bombard, , supra note 2, at 13."},{"key":"S1073110500019380_bib51","doi-asserted-by":"publisher","DOI":"10.1111\/j.1744-1617.2012.01471.x"},{"key":"S1073110500019380_bib20","first-page":"5566","article-title":"Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology and Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules; Final Rule","volume":"78","year":"2013","journal-title":"Federal Register"},{"key":"S1073110500019380_bib11","unstructured":"11. See Consortium on Law and Values in Health, Environment & the Life Sciences, Conference, \u201cShould We Offer Genomic Results to a Research Participant's Family, Including After Death?\u201d (November 6, 2014), available at <http:\/\/consortium.umn.edu\/conference\/should-we-offer-genomic-results-research-participant-s-family-including-after-death> (last visited September 1, 2015)."},{"key":"S1073110500019380_bib71","unstructured":"71. Holm, , supra note 32, at 551; Kleiderman, , supra note 32; AAP & ACMG 2013, supra note 28, at 621\u201322; Haga, Zhao, , supra note 32, at 52."},{"key":"S1073110500019380_bib15","unstructured":"15. U.S. Department of Health and Human Services, \u201cHealth Information Privacy, Personal Representatives,\u201d available at <http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/understanding\/coveredentities\/personalreps.html> (last visited September 1, 2015), construing 45 C.F.R. \u00a7 164.502 (g) [hereinafter DHHS, Personal Representatives]."},{"key":"S1073110500019380_bib72","unstructured":"72. 45 C.F.R. \u00a7 164.502(g) (2014); Office for Civil Rights, U.S. Department of Health and Human Services, Does the HIPAA Privacy Rule Allow Parents the Right to See Their Children's Medical Records? available at <http:\/\/www.hhs.gov\/ocr\/privacy\/hipaa\/faq\/right_to_access_medical_records\/227.html> (last visited September 1, 2015)."},{"key":"S1073110500019380_bib26","unstructured":"26. Wolf, (2012), supra note 1, at 378; Fabsitz, , supra note 1, at 578; Wolf, (2008), supra note 1, at 219."},{"key":"S1073110500019380_bib21","doi-asserted-by":"publisher","DOI":"10.1111\/jlme.12060"},{"key":"S1073110500019380_bib19","doi-asserted-by":"publisher","DOI":"10.1016\/j.dam.2013.08.018"},{"key":"S1073110500019380_bib9","doi-asserted-by":"crossref","first-page":"738","DOI":"10.1016\/j.mayocp.2014.03.015","article-title":"\u201cBiobank Participants' Preferences for Disclosure of Genetic Research Results: Perspectives from the OurGenes, OurHealth, OurCommunity Project,\u201d","volume":"89","author":"Breitkopf","year":"2014","journal-title":"Mayo Clinic Proceedings"},{"key":"S1073110500019380_bib64","unstructured":"64. Beskow, Burke, , supra note 6."},{"key":"S1073110500019380_bib78","unstructured":"78. Id."},{"key":"S1073110500019380_bib1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2012.23"},{"key":"S1073110500019380_bib49","first-page":"25","article-title":"\u201cAn Ethical Framework for Thinking about the Clinical Care that Researchers Owe Their Subjects,\u201d","volume":"34","author":"Wolf","year":"2008","journal-title":"Hastings Center Report"},{"key":"S1073110500019380_bib8","doi-asserted-by":"crossref","first-page":"464","DOI":"10.1111\/jlme.12289","article-title":"\u201cPreferences Regarding Return of Genomic Research Results to Relatives of Research Participants, Including After Participant Death: Empirical Results from a Cancer Biobank,\u201d","volume":"43","author":"Radecki Breitkopf","year":"2015","journal-title":"Journal of Law, Medicine and Ethics"},{"key":"S1073110500019380_bib32","doi-asserted-by":"publisher","DOI":"10.1007\/s40272-014-0111-3"},{"key":"S1073110500019380_bib33","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0101111"},{"key":"S1073110500019380_bib13","unstructured":"13. See, e.g., Johns Hopkins Medicine, Office of Human Subjects Research \u2013 Institutional Review Boards, \u201cHIPAA Questions and Answers Relating to Research,\u201d available at <http:\/\/www.hopkinsmedicine.org\/institutional_review_board\/hipaa_research\/faq_research.html> (last visited September 1, 2015)."},{"key":"S1073110500019380_bib34","doi-asserted-by":"crossref","first-page":"394","DOI":"10.1111\/j.1399-0004.2007.00893.x","article-title":"\u201cColorectal Cancer Survivors Undergoing Genetic Testing for Hereditary Nonpolyposis Colorectal Cancer: Motivational Factors and Psychosocial Functioning,\u201d","volume":"72","author":"Bui","year":"2007","journal-title":"Clinical Genetics"},{"key":"S1073110500019380_bib42","first-page":"5566","article-title":"\u201cModifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules,\u201d","volume":"78","year":"2013","journal-title":"Federal Register"},{"key":"S1073110500019380_bib55","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2013.828528"},{"key":"S1073110500019380_bib58","unstructured":"58. For a rare case in which plaintiffs alleged a duty to disclose a research result \u2013 a positive newborn test for cystic fibrosis \u2013 see Ande v. Rock, 647 N.W.2d 265 (Ct. App. Wisc. 2002)."},{"key":"S1073110500019380_bib77","first-page":"5566","article-title":"Final Rule","volume":"78","year":"2013","journal-title":"Federal Register"},{"key":"S1073110500019380_bib18","unstructured":"18. HIPAA FAQ, supra note 17."},{"key":"S1073110500019380_bib37","doi-asserted-by":"publisher","DOI":"10.1002\/pon.1356"},{"key":"S1073110500019380_bib35","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-011-9370-0"},{"key":"S1073110500019380_bib45","first-page":"763","article-title":"\u201cRights of the Dead,\u201d","volume":"37","author":"Smolensky","year":"2009","journal-title":"Hofstra Law Review"},{"key":"S1073110500019380_bib81","unstructured":"81. Holm, , supra note 32, at 549."},{"key":"S1073110500019380_bib30","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2013.879945"},{"key":"S1073110500019380_bib23","unstructured":"23. See supra note 17."},{"key":"S1073110500019380_bib74","unstructured":"74. Wolf, (2012), supra note 1; Fabsitz, , supra note 1; Wolf, (2008), supra note 1."},{"key":"S1073110500019380_bib14","first-page":"7290","article-title":"CLIA Program and HIPAA Privacy Rule; Patients' Access to Test Reports; Final Rule","volume":"79","author":"Evans","year":"2014","journal-title":"Federal Register"},{"key":"S1073110500019380_bib60","unstructured":"60. Beskow, Burke, , supra note 6."},{"key":"S1073110500019380_bib47","unstructured":"47. American Society of Human Genetics Social Issues Subcommittee on Familial Disclosure, supra note 4, at 482. See also other sources cited supra note 4."},{"key":"S1073110500019380_bib56","unstructured":"56. See Molloy v. Meier, 679 N.W.2d 711 (Minn. 2004); Safer v. Estate of Pack, 677 A.2d 1188 (N.J. App. 1996), cert. denied, 683 A.2d 1163 (N.J. 1996). But see N.J. Stat.10: 5\u201347 (restricting disclosure of an individual's genetic information); Pate v. Threkel, 661 So. 2d 278 (Fla. 1995)."},{"key":"S1073110500019380_bib73","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2013.879959"},{"key":"S1073110500019380_bib79","unstructured":"79. Rothstein, , supra note 21, at 528."},{"key":"S1073110500019380_bib76","doi-asserted-by":"publisher","DOI":"10.1097\/GIM.0b013e318220aaba"},{"key":"S1073110500019380_bib27","unstructured":"27. Wolf, (2012), supra note 1, at 378; Fabsitz, , supra note 1, at 575\u201376."},{"key":"S1073110500019380_bib16","unstructured":"16. 45 C.F.R. \u00a7 164.502(a)(1)(ii) (2014)."},{"key":"S1073110500019380_bib65","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajhg.2014.04.009"},{"key":"S1073110500019380_bib41","doi-asserted-by":"crossref","first-page":"463","DOI":"10.1007\/s10897-013-9604-4","article-title":"\u201cIncidental Findings from Clinical Genome-Wide Sequencing: A Review,\u201d","volume":"23","author":"Bui","year":"2014","journal-title":"Journal of Genetic Counseling"},{"key":"S1073110500019380_bib80","unstructured":"80. As also noted earlier, some states similarly offer posthumous access to an individual's health information to treat a relative. See South Carolina Statutes, supra note 21."},{"key":"S1073110500019380_bib75","unstructured":"75. Wolf, (2012), supra note 1, at 378; Fabsitz, , supra note 1, at 575\u201377."},{"key":"S1073110500019380_bib3","doi-asserted-by":"publisher","DOI":"10.1038\/sj.ejhg.5201822"},{"key":"S1073110500019380_bib5","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31393"},{"key":"S1073110500019380_bib44","unstructured":"44. Saleh v. Reichert, 104 D.L.R. 4th 384, 391 (Can. Ont. Gen. Div. 1993)."},{"key":"S1073110500019380_bib29","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2013.73"},{"key":"S1073110500019380_bib28","doi-asserted-by":"crossref","first-page":"620","DOI":"10.1542\/peds.2012-3680","article-title":"\u201cPolicy Statement: Ethical and Policy Issues in Genetic Testing and Screening of Children,\u201d","volume":"131","author":"Ross","year":"2013","journal-title":"Pediatrics"},{"key":"S1073110500019380_bib2","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2013.52.1906"},{"key":"S1073110500019380_bib25","unstructured":"25. 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