Nordic Cochrane Centre, Rigshospitalet, University of Copenhagen, Blegdamsvej 9, 2100 Copenhagen Ø, Denmark.
Trials. 2011 Nov 23;12:249. doi: 10.1186/1745-6215-12-249.
International calls for registering all trials involving humans and for sharing the results, and sometimes also the raw data and the trial protocols, have increased in recent years. Such calls have come, for example, from the Organization for Economic Cooperation and Development (OECD), the World Health Organization (WHO), the US National Institutes of Heath, the US Congress, the European Commission, the European ombudsman, journal editors, The Cochrane Collaboration, and several funders, for example the UK Medical Research Council, the Wellcome Trust, the Bill and Melinda Gates Foundation and the Hewlett Foundation. Calls for data sharing have mostly been restricted to publicly-funded research, but I argue that the distinction between publicly-funded and industry-funded research is an artificial and irrelevant one, as the interests of the patients must override commercial interests. I also argue why it is a moral imperative to render all results from all trials involving humans, also healthy volunteers, publicly available. Respect for trial participants who often run a personal and unknown risk by participating in trials requires that they--and therefore also the society at large that they represent--be seen as the ultimate owners of trial data. Data sharing would lead to tremendous benefits for patients, progress in science, and rational use of healthcare resources based on evidence we can trust. The harmful consequences are minor compared to the benefits. It has been amply documented that the current situation, with selective reporting of favorable research and biased data analyses being the norm rather than the exception, is harmful to patients and has led to the death of tens of thousands of patients that could have been avoided. National and supranational legislation is needed to make data sharing happen as guidelines and other voluntary agreements do not work. I propose the contents of such legislation and of appropriate sanctions to hold accountable those who refuse to share their data.
近年来,国际上呼吁注册所有涉及人类的临床试验,并分享结果,有时还包括原始数据和试验方案。这些呼吁来自经济合作与发展组织(OECD)、世界卫生组织(WHO)、美国国立卫生研究院、美国国会、欧盟委员会、欧洲监察员、期刊编辑、考科蓝协作组织(The Cochrane Collaboration)以及一些资助者,如英国医学研究理事会(Medical Research Council)、惠康信托基金会(Wellcome Trust)、比尔及梅琳达·盖茨基金会(Bill and Melinda Gates Foundation)和赫威基金会(Hewlett Foundation)。数据共享的呼吁主要限于公共资助的研究,但我认为,公共资助和行业资助研究之间的区别是人为的、不相关的,因为患者的利益必须优先于商业利益。我还将论证为什么将所有涉及人类的试验,包括健康志愿者,的所有结果都公开是道德上的必要。尊重参与试验的试验参与者,他们通常会因参与试验而面临个人和未知的风险,这要求他们——以及他们所代表的广大社会——被视为试验数据的最终所有者。数据共享将为患者带来巨大的利益,促进科学进步,并基于我们可以信任的证据合理利用医疗保健资源。与收益相比,其有害后果微不足道。有充分的文件记录表明,目前选择性报告有利研究和有偏见的数据分析是常态,而不是例外,这对患者有害,并导致成千上万本可避免的患者死亡。需要国家和超国家立法来实现数据共享,因为指南和其他自愿协议不起作用。我提议制定此类立法的内容,并提出适当的制裁措施,以追究那些拒绝分享数据的人的责任。