{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2024,9,15]],"date-time":"2024-09-15T22:02:46Z","timestamp":1726437766007},"reference-count":23,"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 return of individual genetic results to research participants has been widely discussed in the context of an explosion of genetic research utilizing an ever more rapid and inexpensive array of sequencing and bioinformatics platforms. To date, a number of consensus statements guide researchers as to the breadth and limits of their obligations for offering genomic research results to participants. Typically these recommendations are rooted in the result\u2019s clinical validity, actionability, and potential health consequences, and are predicated on the informed consent of the participant. An emerging discussion is the challenging question of the degree to which researchers may additionally have responsibility for offering results to family members of the research participant. Some have argued that ethical obligations to relatives intensify as the significance and actionability of the result increase, while others claim that obligations to next of kin should follow the clinical model where the decision to share genetic results falls to the patient. A detailed reflection on the many ethical issues that arise in considering whether such a responsibility exists, and if so how to honor it, is presented in this issue of <jats:italic>JLME<\/jats:italic> by Wolf et al.<\/jats:p>","DOI":"10.1111\/jlme.12293","type":"journal-article","created":{"date-parts":[[2021,1,25]],"date-time":"2021-01-25T02:53:44Z","timestamp":1611543224000},"page":"514-522","source":"Crossref","is-referenced-by-count":8,"title":["Canadian Research Ethics Board Leadership Attitudes to the Return of Genetic Research Results to Individuals and Their Families"],"prefix":"10.1017","volume":"43","author":[{"given":"Conrad V.","family":"Fernandez","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"P. Pearl","family":"O'Rourke","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura M.","family":"Beskow","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2021,1,1]]},"reference":[{"key":"S1073110500019434_bib16","unstructured":"16. See Beskow, O'Rourke, , supra note 10."},{"key":"S1073110500019434_bib15","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajhg.2009.10.002"},{"key":"S1073110500019434_bib6","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2012.183"},{"key":"S1073110500019434_bib11","unstructured":"11. Fluid Surveys Ultra Version, available at <http:\/\/fluidsurveys.com\/> (last visited August 12, 2015)."},{"key":"S1073110500019434_bib7","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2012.183"},{"key":"S1073110500019434_bib9","unstructured":"9. Council of Europe, supra note 8; Beier, K. , \u201cThe Ethical and Legal Regulation of Human Tissue and Biobank Research in Europe \u2013 Proceedings of the Tiss.EU Project (2011),\u201d available at <http:\/\/www.oapen.org\/search?identifier=407336> (last visited August 12, 2015)."},{"key":"S1073110500019434_bib19","doi-asserted-by":"publisher","DOI":"10.1111\/jlme.12055"},{"key":"S1073110500019434_bib14","doi-asserted-by":"publisher","DOI":"10.1146\/annurev-genom-091212-153506"},{"key":"#cr-split#-S1073110500019434_bib8.1","unstructured":"8. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (2010), available at <http:\/\/www.pre.ethics.gc.ca\/pdf\/eng\/tcps2\/TCPS_2_FINAL_Web.pdf> (last visited August 12, 2015) [hereinafter Tri-Council Policy Statement]"},{"key":"#cr-split#-S1073110500019434_bib8.2","doi-asserted-by":"crossref","unstructured":"Council of Europe, Additional Protocol to the Convention on Human Rights and Biomedicine, Concerning Biomedical Research (2005), available at <http:\/\/conventions.coe.int\/Treaty\/en\/Treaties\/Html\/195.htm> (last visited August 12, 2015)","DOI":"10.1515\/9783110182521.391"},{"key":"#cr-split#-S1073110500019434_bib8.3","unstructured":"National Institutes of Health (NIH), NCI Best Practices for Biospecimen Resources (2011), available at <http:\/\/biospecimens.cancer.gov\/practices\/2011bp.asp> (last visited August 12, 2015)."},{"key":"S1073110500019434_bib2","first-page":"574","article-title":"\u201cEthical and Practical Guidelines for Reporting Genetic Research Results,\u201d","volume":"3","author":"Fabsitz","year":"2010","journal-title":"Circulation: Cardiovascular Genetics"},{"key":"S1073110500019434_bib5","doi-asserted-by":"crossref","first-page":"440","DOI":"10.1111\/jlme.12288","article-title":"\u201cReturning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations,\u201d","volume":"43","author":"Wolf","year":"2015","journal-title":"Journal of Law, Medicine and Ethics"},{"key":"S1073110500019434_bib4","doi-asserted-by":"publisher","DOI":"10.1080\/15265161.2013.828531"},{"key":"S1073110500019434_bib1","doi-asserted-by":"publisher","DOI":"10.1126\/scitranslmed.3000952"},{"key":"S1073110500019434_bib18","unstructured":"18. Tri-Council Policy Statement, supra note 8."},{"key":"S1073110500019434_bib10","doi-asserted-by":"crossref","first-page":"502","DOI":"10.1111\/jlme.12292","article-title":"\u201cReturn of Genetic Research Results to Participants and Families: IRB Perspectives and Roles,\u201d","volume":"43","author":"Beskow","year":"2015","journal-title":"Journal of Law, Medicine and Ethics"},{"key":"S1073110500019434_bib13","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2013.201"},{"key":"S1073110500019434_bib12","doi-asserted-by":"publisher","DOI":"10.1525\/jer.2009.4.3.99"},{"key":"S1073110500019434_bib21","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2013.73"},{"key":"S1073110500019434_bib3","doi-asserted-by":"publisher","DOI":"10.1038\/nrg2302"},{"key":"S1073110500019434_bib17","first-page":"5","article-title":"\u201cThe Risky Business of Lifestyle Genetic Testing: Protecting against Harmful Disclosure of Genetic Information,\u201d","volume":"11","author":"Kohlmeier","year":"2007","journal-title":"University of California Los Angeles Journal of Law and Technology"},{"key":"S1073110500019434_bib20","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6939-15-88"}],"container-title":["Journal of Law, Medicine &amp; Ethics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.cambridge.org\/core\/services\/aop-cambridge-core\/content\/view\/S1073110500019434","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,1,25]],"date-time":"2021-01-25T03:12:07Z","timestamp":1611544327000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.cambridge.org\/core\/product\/identifier\/S1073110500019434\/type\/journal_article"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2015]]},"references-count":23,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2015]]}},"alternative-id":["S1073110500019434"],"URL":"https:\/\/doi.org\/10.1111\/jlme.12293","relation":{},"ISSN":["1073-1105","1748-720X"],"issn-type":[{"type":"print","value":"1073-1105"},{"type":"electronic","value":"1748-720X"}],"subject":[],"published":{"date-parts":[[2015]]}}}