METADAC is recruiting new members with socio-legal, clinical or genetic/medical expertise in Longitudinal Population Studies, for their Data Access Committee.
The METADAC Access Committee uses a multidisciplinary approach to evaluate applications for access to samples and data from UK longitudinal studies. Social scientists and study-facing (participant) members complete the decision- making panel, and are advised by many other individuals:
“Committee meetings also include, as observers, study PIs or study representatives, funder representatives and members of the Technical Review Team (TRT) who support the decision-making… METADAC supports a rounded approach that takes account of a plurality of perspectives in coming to consensual decisions…This rich mix of participants brings to bear perspectives and understandings which support independent and transparent decision-making” (Murtagh et.al, 2018, p. 6-7).
Synopsis of the Access Committees roles:
Each member shares their specialist assessment with the Committee. Often in lively discussions. A consensus decision is reached after considering nine standards that every application must meet: three relate to the study and its participants, three relate to formal ethics approval, and three check the project is well-defined and likely to be achievable. Applications for finite samples are also independently reviewed against the METADAC sample policy.
• Social Science: ethical or public concerns; historical & social contexts; avoiding paternalistic assumptions metholology
• Biomedical: incidental findings; risk factors; methodology; epidemiology; unlooked for findings; statistics
• Clinical: genetic illnesses (serious and treatable); unlooked for findings patients’understandings; interpreting genetic variants;
• Socio-legal: ethical norms; participants’ interests; transparency and equity; process documentation laws, regulations, good practice
• Study facing: reasonable expectations of participants; checking plain language; no disciplinary preconceptions; subjective experience
• Technical & Observers: affordances of the data; study-specific restrictions; disclosure risk in the data; additional data available; incidental finding risks
The Committee assesses some 30-40 applications each year, in about eight meetings. You can see the approved projects here.
Please find more details about METADAC here:
Murtagh, MJ et. al, “Better governance, better access: practising responsible data sharing in the METADAC governance infrastructure”, Human Genomics (2018) 12:24 https://doi.org/10.1186/s40246-018-0154-6
HAPPY HOLIDAYS FROM THE METADAC TEAM!
The METADAC Data Access Committee is currently accepting applications for Committee members with relevant experience in:
• Genetic/medical science
• Clinical expertise
• Socio-legal expertise
The METADAC is a multi-agency multi-study data access structure providing an independent mechanism for the efficient and effective governance of access to biosamples and health-related data from several leading UK longitudinal studies. The Committee meets every six to eight weeks by teleconference, and two face-to-face meetings are held annually (typically in London). Please email a 2-page CV and covering letter demonstrating suitability for the role to the Head of METADAC Secretariat, Dr Stephanie Roberts, at firstname.lastname@example.org. The deadline for application is Friday 31 January 2019. Please note members’ expenses are paid but the role is not remunerated.
This September the METADAC had their annual face-to-face workshop with colleagues from across the UK in attendance at the Wellcome Collection in London. We welcomed the Imagine ID study and Natsal for the first time. The data access committee worked industriously throughout the day to develop and produce strategies and policies that the METADAC will be introducing in 2020: communications and promotion of responsible data use, a new online application form and associated guidance, the criteria for variable selection, and improved plain-language criteria for applications.
The committee considered how best to help applicants write strong applications that clearly meet the assessment criteria. The discussions will be written up as new transparent guidelines to be honed and launched in 2020.
We reviewed the communications strategy of the METADAC for the next 12 months, to include joint workshops with partners such as UKDA, CLOSER and the affiliated cohort studies, and information outlets such as Twitter, a monthly blog post, and a quarterly newsletter. The METADAC website will be going through a brand new makeover to become more user friendly, providing a new Frequently Asked Questions page and respective links to our blog and newsletter.
We assessed the progress of the online application form for METADAC and how it can best support applicants through the application process. We evaluated how emerging technologies will affect application styles in future.
We expect our next face-to-face workshop in April 2020 to be just as engaging and successful as it was this September. Thank you to everyone who joined us in London for your time and expert engagement with the day’s discussions.