{"title":"在向亲属披露遗传信息方面面临法律障碍","authors":"Roy Gilbar, S. Barnoy","doi":"10.1080/14636778.2020.1755639","DOIUrl":null,"url":null,"abstract":"Leading research projects are evidence of the growing public interest in genetic diagnosis and treatment. In this context, disclosure of genetic information to relatives has become a prominent issue. However, this involves patient confidentiality, which is grounded in law and conflicts with disclosure to relatives. When conducting a legal and bioethical discussion in this context, it is first necessary to examine how clinicians perceive the role of law in their practice and how they interpret it. A qualitative study was therefore conducted among clinicians in Israel. The findings indicate that the clinicians’ approach is more relational than that of the law, in view of their pro-active steps to ensure that familial information reaches the relatives when the patient is reluctant to convey this information themselves. In light of these findings the authors argue that the law can resolve situations of explicit and implicit refusal to inform relatives.","PeriodicalId":54724,"journal":{"name":"New Genetics and Society","volume":null,"pages":null},"PeriodicalIF":1.3000,"publicationDate":"2020-04-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Facing legal barriers regarding disclosure of genetic information to relatives\",\"authors\":\"Roy Gilbar, S. Barnoy\",\"doi\":\"10.1080/14636778.2020.1755639\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Leading research projects are evidence of the growing public interest in genetic diagnosis and treatment. In this context, disclosure of genetic information to relatives has become a prominent issue. However, this involves patient confidentiality, which is grounded in law and conflicts with disclosure to relatives. When conducting a legal and bioethical discussion in this context, it is first necessary to examine how clinicians perceive the role of law in their practice and how they interpret it. A qualitative study was therefore conducted among clinicians in Israel. The findings indicate that the clinicians’ approach is more relational than that of the law, in view of their pro-active steps to ensure that familial information reaches the relatives when the patient is reluctant to convey this information themselves. In light of these findings the authors argue that the law can resolve situations of explicit and implicit refusal to inform relatives.\",\"PeriodicalId\":54724,\"journal\":{\"name\":\"New Genetics and Society\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2020-04-21\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"New Genetics and Society\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1080/14636778.2020.1755639\",\"RegionNum\":4,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q4\",\"JCRName\":\"BIOTECHNOLOGY & APPLIED MICROBIOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"New Genetics and Society","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1080/14636778.2020.1755639","RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q4","JCRName":"BIOTECHNOLOGY & APPLIED MICROBIOLOGY","Score":null,"Total":0}
Facing legal barriers regarding disclosure of genetic information to relatives
Leading research projects are evidence of the growing public interest in genetic diagnosis and treatment. In this context, disclosure of genetic information to relatives has become a prominent issue. However, this involves patient confidentiality, which is grounded in law and conflicts with disclosure to relatives. When conducting a legal and bioethical discussion in this context, it is first necessary to examine how clinicians perceive the role of law in their practice and how they interpret it. A qualitative study was therefore conducted among clinicians in Israel. The findings indicate that the clinicians’ approach is more relational than that of the law, in view of their pro-active steps to ensure that familial information reaches the relatives when the patient is reluctant to convey this information themselves. In light of these findings the authors argue that the law can resolve situations of explicit and implicit refusal to inform relatives.
期刊介绍:
New Genetics and Society: Critical Studies of Contemporary Biosciences is a world-leading journal which:
-Provides a focus for interdisciplinary and multi-disciplinary, leading-edge social science research on the new genetics and related biosciences;
-Publishes theoretical and empirical contributions reflecting its multi-faceted development;
-Provides an international platform for critical reflection and debate;
-Is an invaluable research resource for the many related professions, including health, medicine and the law, wishing to keep abreast of fast changing developments in contemporary biosciences.
New Genetics and Society publishes papers on the social aspects of the new genetics (widely defined), including gene editing, genomics, proteomics, epigenetics and systems biology; and the rapidly developing biosciences such as biomedical and reproductive therapies and technologies, xenotransplantation, stem cell research and neuroscience. Our focus is on developing a better understanding of the social, legal, ethical and policy aspects, including their local and global management and organisation.