Including all voices in international data-sharing governance.
Including all voices in international data-sharing governance.
复制标题
DOI：
10.1186/s40246-018-0143-9
复制
发表时间：
2018-03-07
期刊：
影响因子：
4.5
通讯作者：
Cambon-Thomsen A
中科院分区：
文献类型：
--
作者：
Kaye J;Terry SF;Juengst E;Coy S;Harris JR;Chalmers D;Dove ES;Budin-Ljøsne I;Adebamowo C;Ogbe E;Bezuidenhout L;Morrison M;Minion JT;Murtagh MJ;Minari J;Teare H;Isasi R;Kato K;Rial-Sebbag E;Marshall P;Koenig B;Cambon-Thomsen A
各国政府、资助机构、研究机构和出版商已经制定了一系列战略，鼓励研究人员为获取数据集提供便利。这种方法背后的基本原理是，这将带来许多好处，并通过允许从研究投资中获得最大回报，以及减少浪费和提高透明度来促进医疗保健和医学的进步。随着这种方法的发展势头，这些数据共享实践对许多类型的研究产生了影响，因为它们成为世界各地的标准实践。为支持生物医学研究而制定的治理框架不足以应对国际数据共享的复杂性。这一制度以国家为基础，依靠专家委员会进行监督和遵守，这往往导致零碎的决策。这一系统往往会掩盖数据流沿着不同数据提供者的贡献和重要作用，从而使不平等永久化，无论他们是低收入还是中等收入国家的研究人员、患者、研究参与者、团体还是社区。由于研究和数据共享活动基本上是由政府资助的，因此，在道德上有充分理由让提供数据的人参与决策，并建立供他们继续参与的治理制度。我们建议，通过开展关于数据共享的公众咨询，解决获取和使用问题，让所有数据提供者参与关于整个数据流沿着使用和共享数据的决策，并利用数字技术鼓励可访问性、透明度和问责制，使科学治理变得更加透明、更具代表性，并对许多支持者的声音做出回应。我们预计，这种方法可以提高研究过程的合法性，产生否则可能被忽视或忽视的见解，并有助于将有价值的观点纳入国际数据共享的决策。
Governments, funding bodies, institutions, and publishers have developed a number of strategies to encourage researchers to facilitate access to datasets. The rationale behind this approach is that this will bring a number of benefits and enable advances in healthcare and medicine by allowing the maximum returns from the investment in research, as well as reducing waste and promoting transparency. As this approach gains momentum, these data-sharing practices have implications for many kinds of research as they become standard practice across the world. The governance frameworks that have been developed to support biomedical research are not well equipped to deal with the complexities of international data sharing. This system is nationally based and is dependent upon expert committees for oversight and compliance, which has often led to piece-meal decision-making. This system tends to perpetuate inequalities by obscuring the contributions and the important role of different data providers along the data stream, whether they be low- or middle-income country researchers, patients, research participants, groups, or communities. As research and data-sharing activities are largely publicly funded, there is a strong moral argument for including the people who provide the data in decision-making and to develop governance systems for their continued participation. We recommend that governance of science becomes more transparent, representative, and responsive to the voices of many constituencies by conducting public consultations about data-sharing addressing issues of access and use; including all data providers in decision-making about the use and sharing of data along the whole of the data stream; and using digital technologies to encourage accessibility, transparency, and accountability. We anticipate that this approach could enhance the legitimacy of the research process, generate insights that may otherwise be overlooked or ignored, and help to bring valuable perspectives into the decision-making around international data sharing.
登录
查看更多内容
DOI：
10.1126/science.aaf6162
发表时间：
2016-06-10
期刊：
Science (New York, N.Y.)
影响因子：
--
作者：
通讯作者：
--
影响因子：
1.6
作者：
Murtagh, Madeleine J.;Turner, Andrew;Burton, Paul R.
通讯作者：
Burton, Paul R.
影响因子：
6.1
作者：
Rowhani-Farid A;Allen M;Barnett AG
通讯作者：
Barnett AG
影响因子：
--
作者：
Kaye J;Muddyman D;Smee C;Kennedy K;Bell J;UK10K
通讯作者：
UK10K
影响因子：
2.7
作者：
Goldenberg AJ;Maschke KJ;Joffe S;Botkin JR;Rothwell E;Murray TH;Anderson R;Deming N;Rosenthal BF;Rivera SM
通讯作者：
Rivera SM