之所以选择该主题是因为研究资助者和期刊越来越多地促进了健康研究和临床护理的数据和样本共享。会议是围绕案例研究的介绍，分为主题的：尊重参与者和社区；促进良好的治理并促进公平。另外四个介绍集中在指导和政策上。案件和政策文件是通过公开电话确定的，并进行了竞争性判断。

在这里，我们讨论跨主题渗透的问题。

What is equitable sharing?

苏珊·布尔博士，他提出了一个主题演讲，询问了如何公平地共享数据和样本，尤其是在低收入和中等收入设置中生成的样本。她强调，尚未完全解决促进公平共享方面的重大挑战。目前，我们缺乏关于公平共享是什么的强烈概念，并且缺乏有关数据共享实践的成本，收益和危害的经验数据。Professor Karen Barnes谈到了Worldwide Antimalarial Resistance Networkto “level the playing field” for data sharing by malaria researchers in endemic countries. She said that data contributors are invited to collaborate in the secondary analyses and be co-authors on publications arising from the work.

Akin Abayomi教授给出了第二个主题演讲，并引起了注意H3Africa，旨在通过其数据和样本发布政策来促进权益。非洲大陆的研究人员（或与非洲科学家合作）可以优先获取样本，而H3africa访问委员会可能会拒绝该项目内置不足的非洲能力建设的建议。还将暂停将样品释放到外部研究人员，以便时间出版收集样品的H3africa研究。

同意

参与者讨论了同意的不同模型。尽管许多人同意，只要有适当的治理，许多人都可以接受，但其他人则认为应在某些情况下采用具体同意。在巴西，法规要求每当使用生物库的样本用于研究时，都会从参与者那里获得同意。对于收集的医疗保健数据，如果要重新使用这些数据进行研究，则需要具体同意。Dr Nicki Tiffinconfirmed this in her qualitative study with patients in the Western Cape Province of South Africa. Waivers of consent were discussed in the context of legacy data and samples.

Community and public engagement

Several speakers advocated for more community and public engagement around data sharing and biobanking. Engagement is not merely about education but should aim to identify the interests of all stakeholders involved so this understanding can be used to determine culturally appropriate approaches for data sharing or biobank procedures. Participants felt that engagement should include two-way communications with patients, research participants, communities and minority groups such as indigenous populations.Dr Agueda Munoz del Carpio Toia，，，，explained her engagement work with Aymaras leaders from the Peruvian highlands about biobanking.迈克尔·帕克教授警告说，当社区参与很重要时，它可能无法提供数据和样本共享的所有答案。必须努力确保有良好的治理。

Governance

确保预期收益并减轻潜在危害的重要因素是治理。但是什么是良好的治理？参与者同意同意和社区参与可以发挥作用，但是建立和维持信任需要更广泛的系统。该系统需要考虑并平衡 - 为参与者，社区和研究人员提供的利益，利益和保护。我们如何确保对LMIC研究人员的公平性，以防止他们仅将其降级为数据收集器？GFBR参与者建议一种解决方案可能是提高LMIC研究人员在数据科学领域的能力。一些参与者说，在某些国家（例如印度）的能力（例如，对于数据科学）已经存在，但尚未得到利用。其他人建议，第一步是使用明确的目标和数据请求程序制定机构数据共享策略。

Sharing and usage

It became apparent in the discussion that shared data are being under-used by LMIC researchers but also, there is low usage in general. This speak to the need to facilitate the use of shared data and samples – curation alone is not sufficient. It could be a role for funders to ensure the programmes they fund are sufficiently resourced so they can both promote and facilitate access to achieve maximum benefit.

Conclusion

数据和样品在我共享是一个复杂的问题mperfect world where ideals of ‘consent’, ‘community engagement’ and ‘governance’ will rarely be achieved. The cases presented at the meeting highlighted that there is no ‘one-size-fits-all’ and any data and sample sharing approach will need to be context specific. GFBR participants are selected competitively, based on their potential to contribute to the discussions and achieve impact after the meeting. Participants are encouraged to report and discuss the meeting recommendations in their home countries and regions.Fellowshipsare available for GFBR participants to explore issues that arise during the meeting in greater detail, establish new collaborations, and develop new ideas for resolving issues that could not be resolved at the meeting itself.

BMC Medicine正在启动一个新文章集合：‘超越大数据到新的生物医学和健康数据科学：转移到下一个世纪’。我们欢迎与四位杰出的客座编辑一起为这个令人兴奋的收藏提供意见。我们邀请手稿和前物质内容，以研究以数据为基础的患者护理方法，重点关注政策制定，临床实施和公共健康重要性。