Policy, Ethics and Life Sciences Research Centre

Staff Profile

Dr Stephanie Roberts

Research Associate

Background

I am a Research Associate with an interest in ethics and governance of longitudinal studies, and in particular the individual research projects that access participants’ genetic and survey data or samples.  My PhD was in biochemistry, but I soon realised that for me the social sciences were more compelling.  As part of the METADAC project, which operates a multi-disciplinary access governance infrastructure, I am able to combine these new interests with my background in biomedical science. 

I am studying part-time for a qualification in Data Protection Law and Information Governance with Northumbria University.


Research

METADAC PROJECT:

METADAC (Managing Ethico-social, Technical and Administrative issues in Data ACess) is an innovative, multi-study model for governing access to data and biosamples from several UK longitudinal cohort studies. Conceived and led by Professor Madeleine Murtagh, METADAC seeks to provide a deliberatively responsible and respectful access governance infrastructure for sharing sensitive genomic, social and biomedical data and biosamples. The METADAC Committee is built on three requirements: (1) independence and transparency in maintaining trustworthiness and accountability; (2) interdisciplinary expertise; and (3) people-centric decision-making by key stakeholders, including research participants as committee members. Funded jointly by the Economic and Social Research Council (ESRC), the Medical Research Council (MRC) and the Wellcome Trust, the Committee and corresponding Secretariat (run by Dr Stephanie Roberts) were piloted from 2015-18 and successfully re-funded in 2018 for an additional two years. In its ongoing work, METADAC has continued to recognise that responsible and respectful data sharing must be managed within legal requirements as well as the ethical agreements and reasonable expectations of the research participants. In this context, consent is regarded as a process, one that does not end with the receipt of an information leaflet and the signing of a form.

www.metadac.ac.uk

 

GLOBAL ALLIANCE FOR GENOMICS AND HEALTH:

As part of the Regulatory and Ethics work stream (REWS) for the Global Alliance for Genomics and Health (GA4GH), I am part of a team led by Professor Madeleine Murtagh, with Dr Danya Vears (University of Melbourne, Australia) and Dr Joel Minion (Newcastle University) working on a systematic review of stakeholder views on the return of results from genomic research. Key questions include whether stakeholders want to return or receive individual findings.  Initial findings will be shared at the GA4GH 7th Plenary meeting in Boston, 2019.

The Global Alliance for Genomics and Health is a policy-framing and technical standards setting organisation which seeks to enable responsible genomic data sharing within a human rights framework.  The REWS stream, which aims to develop ready-to-use regulatory and ethics guidance for genomic and health-related data sharing, is co-Chaired by Professor Madeleine Murtagh (Newcastle University) and Professor Bartha Knoppers (McGill University). GA4GH is funded by major international research organisations, including the National Institutes of Health, the Wellcome Trust and Genome Canada and its organisation currently comprises 500 institutions worldwide.

GA4GH: https://www.ga4gh.org/
Systematic review: bit.ly/2RLpBM8

Publications