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  • 标题:The Tobacco Industry, Researchers, and Ethical Access to UK Biobank: Using the Public Interest and Public Good
  • 本地全文:下载
  • 作者:Benjamin James Capps ; Yvette van der Eijk
  • 期刊名称:American journal of public health
  • 印刷版ISSN:0090-0036
  • 出版年度:2014
  • 卷号:104
  • 期号:10
  • 页码:1833-1839
  • DOI:10.2105/AJPH.2014.302138
  • 语种:English
  • 出版社:American Public Health Association
  • 摘要:We have asked whether the strategic purpose of the tobacco industry is something that a public resource, such as UK Biobank, should support. Tobacco industry health research has been known to work irreconcilably with the purposes of such institutions, which can be surmised as for the public good and defined to improve the provision, diagnosis, and treatment of illness and the promotion of health throughout society. We have isolated possible conflicts of interest that underlie vested research agendas of the tobacco industry and that may extend to tobacco industry–funded researchers. With respect to research, we find that the tobacco industry is entirely at odds with the purposes of public biobanking. UK Biobank was created to support “a diverse range of research intended to improve the provision, diagnosis and treatment of illness and the promotion of health throughout society.” 1 (p3) It is now a major collection of biological samples and health and lifestyle data derived from its half million participants. This endeavor has been described as a public good. 2 What this means is revealed in its access policy, 3 which allows “all bona fide researchers [to use it] for all types of health related research that is in the public interest,” 3 (§3) where the wider public interest is defined as “being lawful and compatible with respect to human rights.” 3 (§A3.1) In other words, researchers are permitted access to UK Biobank provided their research is compatible with the public interest and contributes to, or does not impede, public goods. This access policy, together with the ethics and governance framework (EGF), 1 generates a relatively unique approach to biobanking, but its implications are relevant to any public repository of samples and data that is nonprofit and provides support for health-related research that is population and prospective based. It may therefore provide a model for similar projects in countries such as the United States. 4 What, then, is the test of bona fides? To answer this question, it is necessary to work out how access might be governed, especially what is meant by the public good and the public interest with respect to conditions of good faith. The answer hinges on the particular circumstances of protecting the rights of participants who donate samples and health and lifestyle information and promoting wider societal interests. In brief, these 2 goals establish public goods that describe collective benefits; in this respect, accessing the information, as well as the proposed research, are plausible goods. However, when deciding how to allow access, a public interest test is used to ascertain the legitimacy of categorical requests and research protocols. Bona fides research, therefore, is a genuine declaration that access will be used to provide generalizable health-related benefits. UK Biobank is not open access because there is research that does not meet this ambition. For example, research concerned with consumer habits, although it might have something to do with healthy lifestyles—such as what kinds of food we choose—would not reflect even broadly construed public health topics in terms of its exclusive market goals. We have focused on tobacco industry–funded research, which is generalizable to health (sometimes) but potentially outside the public health criteria intended in UK Biobank’s EGF. One might expect that health research funded by a private corporation known to create public health concerns would not gain access. The tobacco industry has a long, well-documented, and ongoing history of health research, which it has often used for self-protection from litigation or to promote an illusion of corporate responsibility, with the ultimate intention of furthering its own commercial interests. Nevertheless, one may argue that some tobacco industry–funded research is at least scientifically valid, and in this respect, the interests of tobacco industry–funded organizations and researchers can be appropriately isolated from the interests of the tobacco industry. The question, then, is 2-fold: should the tobacco industry have its interests validated through access to public goods; and can the intents of researchers be isolated from the intents of the tobacco industry? UK Biobank itself states: Previous research into the effects of smoking saves many millions of lives around the world every year. The UK Biobank Resource is well placed to provide more health information to tackle smoking-related diseases. Researchers using the Resource will have to show that they are bona fide health research scientists and that their work is for the public good. It is virtually impossible to see that an application by the tobacco industry to use the Resource would fulfil these requirements and be approved. Likewise applications by researchers funded by the tobacco industry (directly or indirectly) would be similarly unlikely to be approved. 5 Is this statement a too indicting reflection of all tobacco industry–funded research? We have strengthened the UK Biobank’s theoretical justification to argue that such research, despite its potential usefulness, fails the test of bona fides, because the strategic purposes of tobacco industry–funded research are not something that public resources should support. Moreover, the monopolistic interests of tobacco industry–funded research represent the entrapment of research agendas, which neither are public good oriented nor meet the public interest test. 6 Thus, the tobacco industry’s agendas are entirely at odds with the purposes of public biobanking. We have explored this debate with respect to genetic research, to which the tobacco industry has recently turned its attention. 7
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