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An analysis of research guidelines on the collection and use of human biological materials from American Indian and Alaskan Native communities. 从美国印第安人和阿拉斯加土著社区收集和使用人类生物材料的研究指南分析。
Jurimetrics Pub Date : 2002-01-01
Richard R Sharp, Morris W Foster
{"title":"An analysis of research guidelines on the collection and use of human biological materials from American Indian and Alaskan Native communities.","authors":"Richard R Sharp,&nbsp;Morris W Foster","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>American Indian and Alaskan Native communities have expressed concern about the use of human biological materials in research. These concerns have prompted research sponsors and professional organizations to develop guidelines for investigators working with these communities. This paper reviews research guidelines and presents recommendations that reflect \"best practices\" for working with North American indigenous communities in the collection, storage, and distribution of human biological materials for research. These recommendations strike a reasonable balance between three imperatives in research: (1) minimizing harm, (2) treating sample contributors with respect, and (3) promoting intellectual freedom to pursue a range of research questions. The recommendations can be used in designing appropriate methods of collecting and using human biological materials from members of American Indian and Alaskan Native communities and will likely be applicable to other historically disadvantaged communities as well.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"42 2","pages":"165-86"},"PeriodicalIF":0.0,"publicationDate":"2002-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24497954","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}
引用次数: 0
Criminal DNA databank statutes and medical research. 刑事DNA数据库法规和医学研究。
Jurimetrics Pub Date : 2002-01-01
Davina Dana Bressler
{"title":"Criminal DNA databank statutes and medical research.","authors":"Davina Dana Bressler","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Every state and the federal government collects DNA from convicted individuals for certain crimes. Furthermore, most states participate in the Federal Bureau of Investigation's Combined DNA Identification System, which allows states to share criminal DNA records for solving crimes. Some commentators claim that the statues that authorize this practice also would allow the government to use criminal DNA samples or records in medical or behavioral research. A careful reading of the statutes reveals that these assertions are either wrong or exaggerated. Only one state allows for medical research with records, and no state allows medical or behavioral research with DNA samples. This note explains that the DNA samples, not the DNA records, are needed in order to conduct medical or behavioral research. Moreover, this note shows that the statutory phrases \"law enforcement purposes,\" \"other humanitarian purposes,\" and \"research\" into quality control or protocol probably do not authorize medical or behavioral research.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"43 1","pages":"51-67"},"PeriodicalIF":0.0,"publicationDate":"2002-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24596940","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}
引用次数: 0
The Human Cloning Prohibition Act of 2001: vagueness and federalism. 2001年禁止克隆人法案:模糊和联邦制。
Jurimetrics Pub Date : 2002-01-01
Jonathan S Swartz
{"title":"The Human Cloning Prohibition Act of 2001: vagueness and federalism.","authors":"Jonathan S Swartz","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>On July 31, 2001, the U.S. House of Representatives passed The Human Cloning Prohibition Act of 2001. The legislation proposes a complete ban on somatic cell nuclear transfer to create cloned human embryos; it threatens transgressors with criminal punishment and civil fines. House Bill 2505 is the first human cloning prohibition to pass either chamber of Congress. This note argues that the bill is unconstitutionally vague and inconsistent with the Supreme Court's recent Commerce Clause jurisprudence.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"43 1","pages":"79-90"},"PeriodicalIF":0.0,"publicationDate":"2002-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24596941","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}
引用次数: 0
A brief history of the political work of genetics. 遗传学政治工作简史。
Jurimetrics Pub Date : 2002-01-01
Dorothy Nelkin
{"title":"A brief history of the political work of genetics.","authors":"Dorothy Nelkin","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The biological sciences have long been used to define distinctions between people and to define inequalities as a natural consequence of essential biological traits. Today, geneticists draw distinctions on the basis of genetic predispositions. Their population-based methods can reinforce stereotypes about race and ethnic differences, providing concepts, validated by science, through which group differences can be interpreted as biologically ordained. Cases suggest how genetic variants can be used in social policies as individuals are differentially treated, not on the basis of their individual condition, but because of predispositions attributed to their group.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"42 2","pages":"121-32"},"PeriodicalIF":0.0,"publicationDate":"2002-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24498123","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}
引用次数: 0
The coming pharmacogenomics revolution: tailoring drugs to fit patients' genetic profiles. 即将到来的药物基因组学革命:根据患者的基因特征定制药物。
Jurimetrics Pub Date : 2002-01-01
Lars Noah
{"title":"The coming pharmacogenomics revolution: tailoring drugs to fit patients' genetic profiles.","authors":"Lars Noah","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The opportunity for increased precision in pharmaceutical therapy will represent one of the important legacies of the Human Genome Project. Medical researchers have long suspected that genetic differences account for some of the variability in patient response to drugs, but now they hope that the identification of single nucleotide polymorphisms will allow physicians to customize pharmaceutical interventions. Pharmacogenomics will lead to fundamental changes in how drugs are discovered, tested, manufactured, labeled, and marketed. Federal regulators, the courts, and other policy makers will face challenges in accommodating these changes, and, in turn, their responses may have important impacts on the maturation and diffusion of this technology. This Article describes these scientific developments as a prelude to asking whether legal institutions will manage to catch up to or, instead, hinder such advances.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":" ","pages":"1-28"},"PeriodicalIF":0.0,"publicationDate":"2002-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"26581559","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}
引用次数: 0
Privacy on thin ice? Considering the California Court of Appeal decision in Johnson v. Superior Court. 隐私如履薄冰?考虑到加州上诉法院在约翰逊诉高等法院案中的判决。
Jurimetrics Pub Date : 2001-01-01
J A Plosker
{"title":"Privacy on thin ice? Considering the California Court of Appeal decision in Johnson v. Superior Court.","authors":"J A Plosker","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>In Johnson v. Superior Court, the California Court of Appeal determined that a provision of a contract limiting the discovery of the identity of a sperm donor was against public policy and that the privacy interest did not protect against disclosure of this information. Although the court's analysis of the public policy exception to the enforcement of contracts was unnecessary, the opinion properly balances California's and petitioners' interests against an anonymous donor's privacy right.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"42 1","pages":"73-83"},"PeriodicalIF":0.0,"publicationDate":"2001-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"22402993","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}
引用次数: 0
Iceland's plan for genomics research: facts and implications. 冰岛基因组学研究计划:事实与启示。
Jurimetrics Pub Date : 2000-01-01
H T Greely
{"title":"Iceland's plan for genomics research: facts and implications.","authors":"H T Greely","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>The government of Iceland has authorized a private, for-profit firm, deCODE Genetics, to construct a database of the population's medical records as part of a larger plan by deCODE for human genetics research. This article presents the background for genetics research in Iceland, the history of deCODE, and the terms of the law authorizing the database. It then examines five objections to the law, based on commercialization, lack of informed consent, risks to privacy, the effects of other research, and financial unfairness. It concludes that the Icelandic model is not a good precedent for similar research elsewhere.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"40 ","pages":"153-91"},"PeriodicalIF":0.0,"publicationDate":"2000-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25694838","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}
引用次数: 0
Separating predictive genetic testing from snake oil: regulation, liabilities, and lost opportunities. 从万金油中分离预测性基因检测:监管、责任和失去的机会。
Jurimetrics Pub Date : 2000-01-01
M J Malinowski
{"title":"Separating predictive genetic testing from snake oil: regulation, liabilities, and lost opportunities.","authors":"M J Malinowski","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>This article explores the extent to which completion of maps of the human genome, coupled with the introduction of technology that will accelerate the identification of gene and protein function, have introduced immeasurable potential to advance life science and health care through genetic profiling. In light of definitional uncertainty, the regulatory and legal environment surrounding predictive genetic testing threatens to impede clinical utilization of genetic profiling technologies that could significantly improve human health. Especially given that genetic testing technologies have been stigmatized in the public and medical community, they must enter the marketplace with a regulatory framework that assures safety, efficacy, and market responsibility.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"41 1","pages":"23-52"},"PeriodicalIF":0.0,"publicationDate":"2000-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"25154886","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}
引用次数: 0
Privacy issues in second stage genomics. 第二阶段基因组学的隐私问题。
Jurimetrics Pub Date : 1999-01-01
J A Robertson
{"title":"Privacy issues in second stage genomics.","authors":"J A Robertson","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Research that identifies genes useful in the prevention and treatment of disease will require access to biologic samples and medical records protected by traditional notions of privacy and confidentiality. Resolving conflicts between privacy and genomic research will require articulating the ethical rules that should govern such practices and then implementing those rules in the national, regional, or local health systems in which the data of interest exists. As consensus develops about the ethical rules that should govern such research, attention will shift to the practical and political problems of installing and implementing those rules in the agencies and institutions where such research will occur.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"40 ","pages":"59-76"},"PeriodicalIF":0.0,"publicationDate":"1999-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24079442","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}
引用次数: 0
Legal rules and industry norms: the impact of laws restricting health insurers' use of genetic information. 法律规则和行业规范:限制健康保险公司使用遗传信息的法律的影响。
Jurimetrics Pub Date : 1999-01-01
M A Hall
{"title":"Legal rules and industry norms: the impact of laws restricting health insurers' use of genetic information.","authors":"M A Hall","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>Since 1991, twenty-eight states have enacted laws that prohibit insurers' use of genetic information in pricing, issuing, or structuring health insurance. This article evaluates whether these laws reduce the extent of genetic discrimination by health insurers. Using multiple data sources, it concludes that there are almost no well-documented cases of health insurers asking for or using pre-symptomatic genetic test results in their underwriting decisions either before or after these laws, or in states with or without these laws. At present, health insurers are not thinking about or interested in using genetic information of this sort. Using this information is not cost effective and is not seen as contributing significantly to underwriting accuracy. However, if genetic testing information were easily available, some health insurers would consider using it in some fashion if that were legal. In the future, such information could become much more relevant to health insurers than it is now. Therefore, the major effect of these laws is to make it less likely that insurers will use genetic information in the future. Although insurers and agents are only vaguely aware of these laws, the laws have helped to convince the industry that it is not appropriate or socially legitimate to use this information. Thus, these laws have caused the insurance industry to embrace more socially oriented norms and attitudes.</p>","PeriodicalId":81748,"journal":{"name":"Jurimetrics","volume":"40 1","pages":"93-122"},"PeriodicalIF":0.0,"publicationDate":"1999-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"22376487","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}
引用次数: 0
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