D2K, PEALS, Newcastle University


Applicant Workshop Cancelled, Thurs 2 April 2020 London

Unfortunately, we have had to postpone the workshop due to the current advice against all but necessary travel, and the uncertainty about how Covid-19 may affect our ability to deliver the workshop.

We have carefully assessed whether we could instead offer the workshop as a Webinar but with the speakers being based in different cities, and potential considerations of self-isolation, it has not been practical to do so.

Our sincere apologies for any inconvenience this may have caused.

Please register your interest to obtain relevant updates on this workshop
For more details, please contact: samantha.aceto@newcastle.ac.uk

Making data and sample access easier!
A METADAC workshop for current and future applicants
Thursday, 2 April 2020 at the Wellcome Trust London

Join us for a FREE full-day workshop delivered by METADAC, CLOSER and UKDS.

This workshop will explore best practice for researchers requesting genotypic and phenotypic data and samples through METADAC.

You will learn the key elements that make for a successful application:
• justification of data/samples requested
• assessment of risks to the study participants and studies
• writing a clear plain language summary the first time
• meeting all criteria needed to gain approval

When: Thursday, 2 April 2020 from 10:00 to 4:00 p.m.
Where: Darwin Room, 7th Floor, Wellcome Trust, 215 Euston Road, London NW1 2BE
Register here to secure your spot
For more details, please contact: samantha.aceto@newcastle.ac.uk


Data Access Made Easy: METADAC at the London Festival of Genomics

We were delighted to present METADAC to the bustling crowd of vendors, academics and scientists attending the 2020 Festival of Genomics in London at the end of January. The multidisciplinary audience was a perfect match for the research opportunities in METADAC’s affiliated UK longitudinal studies.

Samantha Aceto represented METADAC on both days of the festival, while on the second day we presented a panel discussion entitled, Data Access Made Easy: How to Access Genotypic Data and Phenotypic Data from UK Longitudinal Studies.

The presentation drew upon the expertise of four different members: the Chair, Deputy Chair and two study representatives. Because METADAC’s remit is to maximise responsible use of data, the content emphasised what is available and how to apply successfully.

Neil Walker (Deputy Chair) explained both the role of METADAC and how its access committee d assesses risks to participants, researchers or the studies when data are shared.
Professor Meena Kumari highlighted data collected by the Understanding Society study. Meena is the topic champion for biomarkers, genetics and epigenetics at Understanding Society as well as its representative to METADAC. Based on 39,805 households completing data surveys, around 10,000 Understanding Society participants have now provided genetic data, of which DNA-methylation data is available for about 1,200.

Professor Alissa Goodman, Director of the Centre for Longitudinal Studies (CLS), introduced three of their studies: the 1958 National Child Development Study, the 1970 British Birth Cohort, and the Millennium Cohort Study. METADAC oversees access to their biosamples and genetic and epigenetic data where they are combined with the phenotypic information provided by participants in repeat waves in all three studies.

Professor Madeleine Murtagh (Chair) rounded off the presentation by explaining the access criteria used by METADAC to assess applications. She also led an interactive session based around the key requirement for applicants to provide a the plain language summary, or PLS, explaining their research in accessible terms.

Because a successful PLS can be a challenge to write, we were delighted when the audience took our interactive “PLS Challenge”. Small groups were invited to rewrite a complex, technical abstract using language a 12-year-old would understand. The session was informative and a lot of fun, with prizes given to everyone who participated!

Thank you to our amazing speakers and our terrific audience who made METADAC’s participation in the 2020 Festival of Genomics such a success.

Making Data and Sample Access Easier! Workshop for METADAC applicants, in conjunction with CLOSER and UKDS will be on Thursday 2 April 2020 at Wellcome Trust, London.
If you would like to attend, please register




METADAC at the Festival of Genomics 2020
METADAC will be at the Festival of Genomics on Thursday, January 30th at 1:40pm on the Secret Stage.

METADAC will be discussing the role of data access committees in health data governance of genomics-based research alongside three UK longitudinal studies; Understanding Society (UKHLS),
Centre for longitudinal Studies (CLS) and The English Longitudinal Study of Ageing (ELSA).

METADAC will also present the governance structure behind its data access committee and the main things that slip applicants up when applying for epigenetic, phenotypic or genomic data through METADAC from our affiliated studies.

If you have not already signed up to the Festival, you can do so here.

We look forward to seeing you there.


Becoming a METADAC Access Committee Member: everything you need to know
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




METADAC seeking new expert members
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 metadac@newcastle.ac.uk. The deadline for application is Friday 31 January 2019. Please note members’ expenses are paid but the role is not remunerated.



METADAC in London: Development Workshop September 2019
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.