Jurimetrics最新文献

{"title":"Genetic privacy and the law: an end to genetics exceptionalism.","authors":"L O Gostin,&nbsp;J G Hodge","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>While the proliferation of human genetic information promises to achieve many public benefits, the acquisition, use, retention, and disclosure of genetic data threatens individual liberties. States (and to a lesser degree, the federal government) have responded to the anticipated and actual threats of privacy invasion and discrimination by enacting several types of genetic-specific legislation. These laws emphasize the differences between genetic information and other health information. By articulating these differences, governments afford genetic data an \"exceptional\" status. The authors argue that genetic exceptionalism is flawed for two reasons: (1) strict protections of autonomy, privacy, and equal treatment of persons with genetic conditions threaten the accomplishment of public goods; and (2) there is no clear demarcation separating genetic data from other health data; other health data deserve protections in a national health information infrastructure. The authors present ideas for individual privacy protections that balance the societal need for genetic information and the claims for privacy by individuals and families.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":" ","pages":"21-58"},"PeriodicalIF":0.0,"publicationDate":"1999-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"22141993","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Ethical genetic research on human subjects.","authors":"J Harris","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Since the Nuremberg trials and the Nazi doctors trial following World War II, international ethics protocols have emerged designed to protect human subjects from the atrocities of medical experimentation that were literally routine under the Nazis. Some of the apparent \"lessons\" from the Nazi period have been encapsulated in the Declaration of Helsinki, perhaps the leading medical ethics protocol. This paper argues that these protocols have not been notably conducive to human welfare or to the protection of human rights in the field of human genetics research. The paper proposes new protocols and a new approach to the ethics of research on human subjects.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":" ","pages":"77-91"},"PeriodicalIF":0.0,"publicationDate":"1999-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25686413","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding prohibitions against genetic discrimination in insurance.","authors":"K S Abraham","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The justification for laws prohibiting genetic discrimination in health insurance is not at all clear. Neither privacy protection, the distinctive features of health insurance, nor the distinction between presymptomatic genetic tendencies and actually manifested disease provide a justification, although certain practical considerations may justify these laws.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":" ","pages":"123-8"},"PeriodicalIF":0.0,"publicationDate":"1999-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25154885","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Who are the parents of biotechnological children?","authors":"L. Palmer","doi":"10.31228/osf.io/98wys","DOIUrl":"https://doi.org/10.31228/osf.io/98wys","url":null,"abstract":"L'A. souleve la question du statut legislatif et ethique du recours a la biotechnologie de la reproduction (fecondation in vitro, implantation d'embryon, congelation du sperme...) Il s'agit de savoir si l'on peut beneficier de cette technologie nouvelle en minimisant les risques d'abus","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"93 1","pages":"17-29"},"PeriodicalIF":0.0,"publicationDate":"1994-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"88404683","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Deception in scientific research.","authors":"P. Woolf","doi":"10.4324/9781315244426-9","DOIUrl":"https://doi.org/10.4324/9781315244426-9","url":null,"abstract":"Truth in science depends on the researcher's unbiased application of proven inves? tigative techniques to appropriate experiments. Unfortunately, reports of serious devia? tions from this ideal are becoming increasingly common. The media, the general public, and the scientific community have reacted with shock, disapproval, confusion, and loss of confidence in experimental results. Consequently, congressional committees have taken renewed interest in oversight of research. This article describes recent incidents of alleged misconduct in research and their detection, disclosure, and disciplinary actions taken against the researchers apparently at fault. It argues that stricter, more vigilant procedures to prevent fraudulent research from ever being published are needed. Corrective measures when fraud is discovered after publication must include due process in all investigations and careful retractions in the scientific journals. The article draws attention to several differences in the way that scientists and lawyers assemble and evaluate evidence. No statute of limitations protects the perpetrator of scientific misconduct. The maintenance of integrity in research is therefore a permanent professional responsibility. ?Patricia Woolf is the former co-director of the Ethics and Science Project, Sociology Depart? ment, at Princeton University. She will be teaching at Princeton's Woodrow Wilson School in the Spring of 1989. This article is part of the interim report of the Project on Scientific Fraud and Misconduct of the American Association for the Advancement of Science?American Bar Associ? ation National Conference of Lawyers and Scientists. Since this report was initially prepared, a new dispute involving possible error in a published paper on transgenic research has developed into something of a cause celeebre leading even to congressional hearings. See Culliton, A Bitter Battle Over Error, 240 Sei. 1720(1988); Culliton,^! Bitter Battle Over Error (II), 241 Sei. 18 (1988); Scientific Fraud and Misconduct: Hearings Be? fore the Subcomm. on Human Resources and Individual Rights of the House of Representatives Comm. on Government Operations, 100th Cong., 2nd Sess. (Apr. 11, 1988); NIH Biomedical Grant Programs: Hearings Before the Subcomm. on Oversight and Investigations of the House of Representatives Comm. on Energy and Commerce, 100th Cong., 2nd Sess. (Apr. 12, 1988).","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"48 1","pages":"67-95"},"PeriodicalIF":0.0,"publicationDate":"1988-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73791436","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}