META-DAC - Managing Ethico-social and Technical issues and Administration of Data Access Committee

META-DAC - 管理伦理社会和技术问题以及数据访问委员会的管理

• 批准号: MR/N01104X/2
• 负责人: Madeleine Murtagh
• 金额: $ 17.71万
• 依托单位: Newcastle University
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2017
• 资助国家: 英国
• 起止时间: 2017 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=MR%2FN01104X%2F2
• 关键词: META; DAC; Managing; Ethico; social

In a world where rapid technological progress and an ageing population place ever increasing demands on medical and social care, one of our most potent weapons is the translation into societal benefit of scientific resources embodied in longitudinal cohorts studies and biobanks. Although it is easy to appeal to the simple idea of using these resources wisely, the reality is more challenging. Internationally, this is a major strategic issue for most large-scale data/sample generating biomedical and social studies as well as for their funders, who wish to see an optimal use of and return from their investments. The apparently simple administrative task of granting access to data and biosamples is often far from straightforward because of potential - or actual - conflicts of interest between study participants, data generators, data users, funders, ethico-legal experts, specialist lobby groups and policy developers. For publically funded studies these are all legitimate stakeholders, with different opportunities to express their perspectives. Appropriately balancing these views is a complex process involving understanding of the underlying science as well as the relevant ethical, legal, social and technical issues. Effectively managing extensive and complex data and biosamples requires active and innovative governance and technical oversight of access to data and biosamples. The METADAC (Managing Ethico-social, Technical issues and Administration Data Access Committee) is a multi-agency multi-study data access structure which will service several of the UK's major cohort studies (1958BC, 1970BC, Millennium BC and Understanding Society) and to provide a scalable mechanism to incorporate additional cohorts in the future (eg. ELSA). The META-DAC will develop, implement and maintain all administrative and technical activities plus policies needed to realise an access mechanism that is fit for purpose given the complex biomedical/social data and samples in question: its primary aim to optimise the use of the scientific resources under its governance. The METADAC is committed to a streamlined, proportionate and responsive form of governance which maintains full regard to the consents and expectations of the study participants who provided the research materials. Complex decisions about data access are not simply ethical or technical; they go to the heart of the politics of scientific research.

在一个技术快速进步和人口老龄化对医疗和社会护理的需求不断增加的世界里，我们最有力的武器之一是将纵向队列研究和生物库中体现的科学资源转化为社会效益。尽管明智地使用这些资源的简单想法很容易吸引人，但现实更具挑战性。在国际上，对于大多数产生大规模数据/样本的生物医学和社会研究及其资助者来说，这是一个重大的战略问题，因为他们希望看到其投资得到最佳利用和回报。授予数据和生物样本访问权这一看似简单的行政任务往往远非直截了当，因为研究参与者、数据生成器、数据使用者、资助者、伦理法律专家、专业游说团体和政策制定者之间存在潜在的或实际的利益冲突。对于公共资助的研究，这些人都是合法的利益相关者，有不同的机会表达他们的观点。适当地平衡这些观点是一个复杂的过程，涉及对基础科学以及相关的伦理、法律、社会和技术问题的理解。有效管理广泛而复杂的数据和生物样本需要对数据和生物样本的获取进行积极和创新的治理和技术监督。METADAC（管理伦理-社会，技术问题和管理数据访问委员会）是一个多机构多研究数据访问结构，将服务于英国的几个主要队列研究（1958BC, 1970BC，千年BC和理解社会），并提供一个可扩展的机制，以纳入未来的其他队列(例如。埃尔莎)。META-DAC将制定、实施和维护所有行政和技术活动以及政策，以实现一种适合复杂生物医学/社会数据和相关样本的获取机制：其主要目标是优化其治理下的科学资源的使用。METADAC致力于建立一种精简、适度和响应性强的管理形式，充分考虑提供研究材料的研究参与者的同意和期望。关于数据访问的复杂决策不仅仅是道德或技术问题；它们触及了科学研究政治的核心。

项目成果

Clinical onset of atopic eczema: Results from 2 nationally representative British birth cohorts followed through midlife

• DOI: 10.1016/j.jaci.2019.05.040
• 发表时间: 2019-09-01
• 期刊: JOURNAL OF ALLERGY AND CLINICAL IMMUNOLOGY
• 影响因子: 14.2
• 作者: Abuabara, Katrina;Ye, Morgan;Langan, Sinead M.
• 通讯作者: Langan, Sinead M.

A deterministic approach for protecting privacy in sensitive personal data.

• DOI: 10.1186/s12911-022-01754-4
• 发表时间: 2022-01-28
• 期刊: BMC medical informatics and decision making
• 影响因子: 3.5
• 作者: Avraam D;Jones E;Burton P
• 通讯作者: Burton P

Consensus Statement on Public Involvement and Engagement with Data Intensive Health Research.

• DOI: 10.23889/ijpds.v4i1.586
• 发表时间: 2019-02-12
• 期刊: International journal of population data science
• 作者: Aitken M;Tully MP;Porteous C;Denegri S;Cunningham-Burley S;Banner N;Black C;Burgess M;Cross L;van Delden JJ;Ford E;Fox S;Fitzpatrick NK;Gallacher K;Goddard C;Hassan L;Jamieson R;Jones KH;Kaarakainen M;Lugg-Widger F;McGrail K;McKenzie A;Moran R;Murtagh MJ;Oswald M;Paprica A;Perrin N;Richards EV;Rouse J;Webb J;Willison DJ
• 通讯作者: Willison DJ

A Deterministic Approach for Protecting Privacy in Sensitive Personal Data

保护敏感个人数据隐私的确定性方法

• DOI: 10.21203/rs.3.rs-344334/v1
• 发表时间: 2021
• 作者: Avraam D

Privacy preserving data visualizations.

• DOI: 10.1140/epjds/s13688-020-00257-4
• 发表时间: 2021
• 期刊: EPJ data science
• 影响因子: 3.6
• 作者: Avraam D;Wilson R;Butters O;Burton T;Nicolaides C;Jones E;Boyd A;Burton P
• 通讯作者: Burton P