It appears that large-scale population genetic studies are the necessary next step in genomics research. Such studies promise to provide correlative data to permit researchers to understand the etiology of a vast array of complex human diseases. Simultaneously, such studies are increasingly seen as yet another mechanism for the developed world to benefit at the expense of the developing world. In fact, a recent World Health Organization Report suggests that "without explicit attention at the international level, the initial technological fruits of genomics are likely to consist primarily of therapeutic and diagnostic applications for conditions affecting large populations in rich countries." (World Health Organization, Genomics and World Health, 2002). In developed and developing countries alike, there are concerns that the pharmaceutical industry stands to gain at the expense of the population(s) from which population genetic data are derived. In light of the current interest concerning ongoing population genetic studies and an increasing interest by many countries, Canada included, in embarking on large-scale population genetic research, it is appropriate to consider the concept of benefit-sharing as a potential mechanism to assuage these concerns. It is the author's position that by virtue of common law equitable principles and developing norms in international law, including the Human Genome Organization Statement on Benefit-Sharing, that there are principled legal and ethical reasons to compel the sharing of benefits that accrue from the commercialization of the resulting data. Using the United Nations Convention on Biological Diversity and the Bonn Guidelines as a model, I suggest that appropriate benefit-sharing mechanisms have been considered in the context of non-human biological materials and that these same mechanisms may be applicable in the context of international and intra-national population genetic studies.
看来，大规模的群体遗传研究是基因组学研究的下一步。此类研究有望提供相关数据，使研究人员能够了解大量复杂人类疾病的病因。与此同时，这种研究越来越被视为发达国家以牺牲发展中国家为代价而获益的另一种机制。事实上，世界卫生组织(World Health Organization)最近的一份报告指出，“如果没有得到国际层面的明确关注，基因组学的最初技术成果很可能主要包括对影响富裕国家大量人口的疾病的治疗和诊断应用。”(世界卫生组织，《基因组学与世界卫生》，2002年)。无论是在发达国家还是在发展中国家，都有人担心制药业会以牺牲获得群体遗传数据的人群为代价而获利。鉴于目前对正在进行的人口遗传研究的兴趣以及包括加拿大在内的许多国家对开始大规模人口遗传研究的兴趣日益增加，应考虑将利益分享的概念作为减轻这些关切的潜在机制。作者的立场是，根据普通法的公平原则和国际法的发展规范，包括《人类基因组组织关于利益分享的声明》，有原则性的法律和伦理理由迫使分享由此产生的数据商业化所产生的利益。我以《联合国生物多样性公约》和《波恩准则》为榜样，建议在非人类生物材料的情况下考虑适当的惠益分享机制，这些机制也可能适用于国际和国内人口遗传研究。
{"title":"Population genetic studies: is there an emerging legal obligation to share benefits?","authors":"Lorraine Sheremeta","doi":"","DOIUrl":"","url":null,"abstract":"<p><p>It appears that large-scale population genetic studies are the necessary next step in genomics research. Such studies promise to provide correlative data to permit researchers to understand the etiology of a vast array of complex human diseases. Simultaneously, such studies are increasingly seen as yet another mechanism for the developed world to benefit at the expense of the developing world. In fact, a recent World Health Organization Report suggests that \"without explicit attention at the international level, the initial technological fruits of genomics are likely to consist primarily of therapeutic and diagnostic applications for conditions affecting large populations in rich countries.\" (World Health Organization, Genomics and World Health, 2002). In developed and developing countries alike, there are concerns that the pharmaceutical industry stands to gain at the expense of the population(s) from which population genetic data are derived. In light of the current interest concerning ongoing population genetic studies and an increasing interest by many countries, Canada included, in embarking on large-scale population genetic research, it is appropriate to consider the concept of benefit-sharing as a potential mechanism to assuage these concerns. It is the author's position that by virtue of common law equitable principles and developing norms in international law, including the Human Genome Organization Statement on Benefit-Sharing, that there are principled legal and ethical reasons to compel the sharing of benefits that accrue from the commercialization of the resulting data. Using the United Nations Convention on Biological Diversity and the Bonn Guidelines as a model, I suggest that appropriate benefit-sharing mechanisms have been considered in the context of non-human biological materials and that these same mechanisms may be applicable in the context of international and intra-national population genetic studies.</p>","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"12 1","pages":"36-8"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24984019","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":"Regulating a revolution: the extent of reproductive rights in Canada.","authors":"Chantelle Washenfelder","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"12 2","pages":"44-52"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24984593","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":"Consistency and privacy: do these legal principles mandate gamete donor anonymity?","authors":"Lisa Shields","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"12 1","pages":"39-45"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24984020","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":"The Australian policy debate about human embryonic stem cell research.","authors":"Wayne Hall","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"12 2","pages":"27-33"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24984592","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":"The imperative to treat: the South African state's constitutional obligations to provide antiretroviral medicines.","authors":"Lisa Forman","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"12 1","pages":"9-15"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24984015","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":"Section 7 of the Charter: a constitutional right to health care? Don't hold your breath.","authors":"Nola M Ries","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"12 1","pages":"29-35"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24984018","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":"Children and research participation: who makes what decisions.","authors":"Christy Simpson","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"11 2","pages":"20-9"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24953365","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":"Paternalistic or protective? Freedom of expression and direct-to-consumer drug advertising policy in Canada.","authors":"Jennifer L Gold","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"11 2","pages":"30-6"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24953366","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":"It's not (just) about privacy: a new perspective on health databases.","authors":"Ted Schrecker","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"12 2","pages":"11-7"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24984591","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":"\"To become old is to become institutionalized and imprisoned\": comparing regulatory frameworks for the use of restraints in long-term care facilities.","authors":"Fiona McDonald","doi":"","DOIUrl":"","url":null,"abstract":"","PeriodicalId":87182,"journal":{"name":"Health law review","volume":"12 1","pages":"22-8"},"PeriodicalIF":0.0,"publicationDate":"2003-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"24984017","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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