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.
{"title":"Genetic privacy and the law: an end to genetics exceptionalism.","authors":"L O Gostin, 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}
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.
自二战后纽伦堡审判和纳粹医生审判以来，国际道德规范应运而生，旨在保护人类受试者免受纳粹统治下习以为常的医学实验暴行的伤害。从纳粹时期吸取的一些明显的“教训”已被浓缩在《赫尔辛基宣言》(Declaration of Helsinki)中，这或许是最重要的医学伦理协议。本文认为，在人类遗传学研究领域，这些协议并没有显著地有利于人类福利或保护人权。本文提出了人类研究伦理的新协议和新途径。
{"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}
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.
{"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}
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
{"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}
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).
科学中的真理取决于研究者对已证实的实验的公正应用。阴性技术，以适当的实验。不幸的是，有报道称严重的devia?与这种理想相悖的行为正变得越来越普遍。媒体、公众和科学界的反应是震惊、不赞成、困惑和对实验结果失去信心。因此，国会委员会重新对研究监督产生了兴趣。这篇文章描述了最近在研究中被指控的不端行为，以及对这些不端行为的发现、披露和对明显有过错的研究人员采取的纪律处分。它认为，需要更严格、更警惕的程序来防止欺诈性研究的发表。在发表后发现欺诈时，纠正措施必须包括所有调查的正当程序和科学期刊上的谨慎撤回。这篇文章让人们注意到科学家和律师在收集和评估证据的方式上的几个差异。没有法定时效保护科学不端行为的肇事者。因此，维护科研诚信是一项永久的职业责任。帕特里夏·伍尔夫(Patricia Woolf)是社会学系伦理与科学项目的前联合主任。ment，普林斯顿大学教授。本文是美国科学促进会科学欺诈和不端行为项目中期报告的一部分。美国律师协会?全国律师和科学家会议。自从这份报告最初准备好以来，一篇关于转基因研究的已发表论文中可能存在的错误引发了一场新的争议，这已经发展成为一项声名鹊起的事业，甚至导致了国会听证会。参见Culliton, A Bitter Battle of Error, 240 Sei. 1720(1988);Culliton, ^ !《错误的苦战》(下)，241卷18期(1988);科学欺诈和不端行为:听证会?在Subcomm之前。关于人力资源和个人权利的众议院委员会政府运作，第100届会议，第二次会议。(1988年4月11日);美国国立卫生研究院生物医学资助计划:小组委员会之前的听证会。关于众议院能源和商业委员会的监督和调查，第100届国会第二次会议。(1988年4月12日)。
{"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}
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