Access Review Committee
The Access Review Committee’s (ARC) role is to provide an independent examination and response to requests for access to genomic and health data held in the Genomics England National Genomic Research Library. These requests come from academic researchers, clinicians, and commercial researchers. There is a set application process for these individuals to go through to access the data. The ARC reviews these applications to check that they are in line with the aims of the National Genomic Research Library Protocol and to assess whether they are in the interest of both the public and the participants.
ARC meetings take place a minimum of three times per year, normally four. In these meetings, the ARC will decide to approve, decline or amend the request for access to the Library. For a meeting to be quorate, required attendees are the ARC Chair, one member of the Participant Panel and any one member of the ARC. Up to four places are reserved for the representatives of the Participant Panel, and these representatives are free to rotate attendance at the ARC meetings.
Professor Jonathan Knowles
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.
Professor Parveen Kumar
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.
Professor APS Hungin OBE MD FRCP FRCGP FRSA
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 Hastings Ward
Chair of the Participant Panel
Jillian is the Chair of the Participant Panel, representing the interests of Genomics England participants. 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.
Participant Panel representative
Cecily is a member of the ARC in her capacity as a representative of the Participant Panel and also sits on the South West NHS Genetic Medicine Service Patient Public Forum. Cecily has a passionate belief in the future of Genomic Medicine and the benefits that it will bring to patients. Members of Cecily’s family joined the 100,000 Genomes Project in 2015 in order to try and get information and answers for an unknown genetic condition.
Participant Panel representative
Peter comes from an engineering background and currently works as a systems analyst. As parents of a young boy who was born with a rare neurological disorder, Peter’s family enrolled into the 100,000 Genomes Project in 2016. His family represents a key group who will significantly benefit from the adoption of Whole Genome Sequencing. Currently, his son attends a range of therapies including Hippotherapy (physio on a horse) – a highlight of their week, as well as monthly group therapy sessions at their local hospice.
Peter is passionate about the Project and using his personal experiences to do what he can to help others who may find themselves in a similar situation, now and in the future.
Participant Panel representative
Kate has been living with secondary breast cancer since 2011 and is a member of ARC as part of her role as a representative of the Participant Panel. She has an active role with several national breast cancer support groups, has successfully campaigned for fair access to cancer interventions and has sat as an expert patient on the Leeds Teaching Hospitals NHS Trust cancer patient forum.
Kate is a HCPC and CSP registered physiotherapist with a specialist clinical background in ICU and surgical oncology. She is currently a Principal Lecturer in Physiotherapy at Leeds Beckett University and has undertaken and supervised numerous NHS based clinical research projects. Kate hopes to bring to ARC her knowledge and experience as a long term cancer patient and be a voice for others with an incurable cancer diagnosis.