Access Review Committee

The Access Review Committee (ARC) provides an independent examination of requests for data access, with regards to the acceptable uses of the Genomics England dataset. The acceptable uses are outlined in REC approved 100,000 Genomes Project Protocol and the Data Access and Acceptable Uses Policy. The ARC will decide to approve, decline, or amend requests for access to data. External expertise may be called upon to assist the decision-making process, where appropriate.

Up to four places are reserved for the representatives of the Participant Panel and they contribute and vote as any other member of the ARC. The individual Participant Panel representatives are free to rotate attendance at the ARC meetings according to their availability; at least one Participant Panel Representative must be in attendance for an ARC meeting to take place.

In 2010, Professor Knowles was awarded the Scrip Lifetime Achievement Award for his long academic and commercial career distinguished by his passion for personalized medicine.
Jonathan Knowles holds a visiting chair at the University of Oxford, held a distinguished professorship in personalized health care at the Finnish Institute for Molecular Medicine at the University of Helsinki and is a Professor Emeritus at Ecole Polytechnique Fédérale de Lausanne in Switzerland. In addition, he is a Trustee of CRUK, a member of the European Molecular Biology Organization and a William Pitt Fellow of Pembroke College Cambridge. He serves on a number of academic and biotech boards and is currently Chairman of the board of Adappimunne Ltd and Immunocore Ltd.

Stephen Holgate is MRC Professor of Immuno-pharmacology at the University of Southampton. He studied medicine at Charing Cross and after training in respiratory medicine he undertook a two-year Fellowship at Harvard Medical School. On returning to Southampton in 1980, he pursued a research career on the mechanisms of asthma and allergy involving a wide range of different approaches.

Most recently, Stephen was chair of Main Panel A of the Research Excellence Framework, 2014. Currently, he chairs the NC3Rs Board, the Hazardous Substances Advisory Committee (Defra) and the European Respiratory Society Science Council. He also chairs the MRC Translational Group responsible for pulling through discovery science into patient benefit and is a member of the MRC Strategy Board and the NERC Science and Innovation Strategy Board.
Stephen has been appointed to the European Commission’s Scientific Panel for Health that will help set the research agenda for ‘Horizon 2020’. In 2011, he was appointed CBE for services to clinical science.

Alastair Kent was the executive director of Genetic Alliance UK (GA-UK) the national alliance of over 200 patients support organisations helping those with rare and genetic disorders for almost 25 years. He founded and chaired Rare Disease UK, the campaign managed by GA-UK until January 2018. In April 2017 he stepped back from this to take on a new role for the organisation, namely that of Ambassador, promoting awareness of the needs and expectations of all those affected or at risk from rare and genetic conditions. He retired from Genetic Alliance UK at the end of April 2018, but remains active in the field, working as an independent consultant.

Alastair was made OBE for services to healthcare in 2011. In 2017 he became a Fellow of the Royal Society of Arts for his work on behalf of genetic patients and families, and was named Healthcare Advocate of the Year at the Communique Awards ceremony. In 2018 he received a lifetime achievement award from Eurordis, the European organisation for rare diseases.

Parveen Kumar is Professor of Medicine and Education at Barts and the London, Queen Mary University of London. She qualified in medicine at St Bartholomew’s Hospital Medical College after completing an intercalated BSc degree; her research was in small bowel disorders, particularly coeliac disease.
Kumar was appointed as a Non-Executive Director of the National Institute of Clinical Excellence (NICE) at its inception in 1999 and resigned this post in 2002 when she was appointed as the Chairman of the Medicines Commission UK. She has also served as a Non-Executive Director on an acute hospital Trust board. She chaired the Bupa Foundation for research for 3 years. She has been President of the British Medical Association, President of the Royal Society of Medicine and vice president of the Royal College of Physicians. She was awarded CBE for services to Medicine.

Pali Hungin, Emeritus Professor of General Practice, Newcastle University, was the founding Dean of Medicine at Durham University (2003–14) and the President of the BMA in 2017. A GP for over 30 years he has experience of both primary and secondary care with a clinical research career across health care boundaries. He is currently leading a commission at the Academy of the Medical Royal Colleges on the future direction of medicine and the evolving role of the doctor in a world of shifts in societal and technological advances.

Richard Stephens is a survivor of two cancers and a heart emergency. He has participated in four clinical trials and six other research studies, and currently serves on two trial management groups. His professional career has included work in education and local government.

As a patient advocate and representative in health and medical research, his principal role is as NCRI’s consumer lead. He chairs NCRI’s Consumer Forum and has sat on on several other national and regional committees and bodies, including CRUK’s CTAAC, NCC-C’s Management Board, NETS CC’s PPI SG, and HTA and RfPB funding committees.

Richard is joint Editor-In-Chief of BioMed Central’s new online open access Journal of Research Involvement and Engagement. He has co-authored conference abstracts and posters, two published academic papers, and 2012’s Action On Access, an influential consumer-led report recommending organisational and cultural changes to encourage and support more patients to participate in research.

He is also co-chair of the advisory committee to NIHR’s new Dissemination Centre, is a patient representative with Genomics England and the MRC CTU, and leads the innovative Patient Panel working with AstraZeneca.

Jillian is the Chair of the panel representing the interests of participants in the 100,000 Genomes Project. Her family joined the Project in 2015, in search of answers for her young son who is severely disabled. She brings professional analytical, strategic and communication skills from a career in consultancy and the Civil Service. She also brings her years of lived experience with a child who has complex needs.