| LM network resources
Alastair Kent has been the Director of Genetic Alliance UK, which was known as Genetic Interest Group until 2010, since it began in 1993. When named the Genetic Interest Group John Gillott was employed as Policy Officer whilst he was also LM’s Science editor. Presently Kent is also the chair of the Department of Health Rare Disease Stakeholder Forum, and chair and founder of Rare Diseases UK (RDUK), which appears to have been entirely funded by pharmaceutical companies since its inception, as well as being a member of the advisory committee for the Progress Educational Trust (PET), which was established to promote the benefits of reproductive and genetic science and 'believes that reproductive and genetic technologies have much to offer'. He was also on the non-executive advisory council for the pro-vivisection campaign group ‘Understanding Animal Research’ in 2009.
- 1 Current Employment
- 2 Previous Employment
- 3 Genetic Interest Group Controversy
- 4 Genetic Alliance UK and Rare Diseases UK
- 5 Views
- 6 Career History
- 7 Publications
- 8 Notes
Kent has been Director of Genetic Alliance UK since its inception in 1993. He is also chair of the linked chairty RDUK, which was established in November 2008, but has its accounts audited as part of the Genetic Alliance UK's accounts.
Since 2013 Kent has sat on the NHS England Rare Diseases Advisory Group, the Genomics England Ethics Advisory Committee, the Scottish Medicines Consortium Task & Finish Group on improving access to medicines for patients with rare diseases and the Department of Health's Rare Diseases stakeholder forum, which he has chaired from 2014. Since 2004 he has sat on the Public Population Projects in Genetics (P3G) Ethics Committee and the UK Genetics Testing Network Steering Committee for the Department of Health since 2003. He has also sat on: the Royal College of Physicians (Now Joint Committee of the Royal College of Physicians, RCPath and British Society for Human Genetics) Clinical Genetics Committee (since 1997); the Association of British Insurers Genetics Advisory Committee (since 1996); and the European Alliance of Genetic Support Groups (since 1993) of which he became president in 1995. He is also a long serving advisor to the Progress Educational Trust although he does not include this on his CV.
Prior to becoming the director of Genetic Alliance UK Kent was director of Action for Blind people between 1989 and 1993 when one report notes he was ousted as director and that he felt his dismissal as director was 'unfair and unwarranted'. He was Director of Education, Employment and Residential Services at the Royal National Institute for Deaf People between 1986 and 1989. From 1982 until 1986 he was Principal of Barnstead place at Queen Elizabeth's Foundation for the Disabled, before which he worked as a County Careers Officer specialising in special needs for North Yorkshire County Council between 1981-82. From 1977-1981 he was a Specialist Careers Officer for Cambridge County Council and before this was a careers officer for Norfolk County Council from 1973 until 1977.
Prior Committee Memberships
From 2007-2013 Kent was a member of the ethics committee for the '1000 Genomes' International Project which sought 'to provide a comprehensive resource on human genetic variation' and 'to find most genetic variants that have frequencies of at least 1% in the populations studied'. Between 1996 and 2013 Kent sat on the European Federation of Biotechnology's Task Group on the Public Perceptions of Biotechnology, during which time he was also a member of the Department of Health Genetics Commissioning Advisory Group (GenCAG) (2002-2012). Between 2008 and 2011 he was on the EMEA committee for advanced therapies. He was a 'Clinigene' NoE International Advisory Board Member between 2006 and 2011 and from 2002 until 2011 was a member of the Human Genetics Commission. From 2000 until 2006 he was on the Patient Representative Orphan Medicinal Products Committee for the EMEA and was a Justice of Peace in Cambridge (1996-2000). He was on the International HapMap Project Ethics Committee (2004-2005), the EU STRATA Group on Genetic Testing (2003-2004), the Anglia and Oxford Public Health Genetics Unit Steering Committee (1998-2000), and the Standing Advisory Group on Consumer Involvement in the NHS R & D Programme, now known as 'INVOLVE' (1997-2000). Before this he was on the North Thames RHA Community Genetics Steering Group Committee from 1996 until 1999 and the BMA Ethics and Genetics Working Party from 1995 until 1998, which covered the time period of his involvement in the Genetic Interest Group Controversy (see below).
Between 1980 until 1999 he was a Trustee for Skill: National Bureau for Students with Disabilities, and of the Muscular Dystrophy group from 1981 until 1999. From 1991-1995 he was a Trustee of Change: Council of People with Learning and Sensory Disabilities and between 1992 and 1998 of United response. He was also a Trustee for HASICOM (Hearing and Sight Impaired Communication) and of the National Deaf Children's Society 1994-1998.
Kent was educated at Birkenhead school where he gained 5 GCE O Levels and 4 A Levels between 1963 and 1970. He then undertook a BA (Hons) in Natural Sciences at the University of Cambridge, following which he studied for a Diploma in Careers Guidance at Newcastle Polytechnic between 1974 and 1976. His BA at Cambridge became an MA in 1977, during the period when he attained an MPhil (by research) at Hatfield Polytechnic (1976-1979). He also gained a postgraduate certificate in Management from the Open University after study from 1989-1991.
Genetic Interest Group Controversy
Under Kent's directorship the Genetic Interest Group became embroiled in controversy in 1997 related to its role lobbying for the 'Directive on the Legal Protection of Biotechnological Inventions', alternatively named the 'Life Patent Directive' due to proposals allowing for the patenting of genes, cells, plants, animals, human body parts and genetically modified or cloned human embryos. Up until a 1995 vote, when the European Parliament rejected the draft Directive, he had publicly opposed attempts to patent genes warning that 'there is something fundamentally unacceptable about any institution, corporation, or individual having ownership over part of a human being' and arguing patents would reduce collaboration between scientists. However, by March 1997 his name appeared on a pamphlet called Patents for Life which instructed MEPs to vote to pass the gene patenting directive into law or else explain to families 'how it was that you had the opportunity to create significant progress in the search for cures, but you chose not to take that step.' One possible reason for this change in direction may have been related to funds received to GIG from pharmaceutical companies such as SmithKline Beecham, which included the hiring of professional consultancy GPC Market Access to assist with the lobby campaign, now in favour of the Directive. In spite of the fact the stated views of the GIG group were clearly against gene patenting, with the direction of Market Access (and Kent’s connivance) GIG led a lobbying campaign with the slogan 'Patents for Life' and launched a massive disinformation campaign which tried to inflate the emotions of decision-makers by talking about saving lives, ending hunger and creating jobs. It was not until after the event of the 1997 vote, in which the efforts of Kent and his well-oiled lobbying machine helped to sway the decision, that some patient interest groups became aware of the fact that his activities in the name of GIG and EAGS were in fact contrary to their own views on the Directive.
Genetic Alliance UK and Rare Diseases UK
In November 2008 Genetic Alliance UK established the charity Rare Diseases UK (RDUK) which describes its main purpose as ' to campaign for the development and implementation of an effective strategy for rare diseases in the UK'. Alastair Kent is the director or chair of each of these charities. RDUK's accounts are independently audited as part of Genetic Alliance UK's accounts for the years ending 31st March 2013 and 31st March 2014. In the Accounts to 2013 £43,000 was donated by GlaxoSmith Klein as reported in donations and grants. In the grants receivable section a further £122,940 came from/to Rare disease UK, which Kent is Chair of. It is newly registered with the charity commission and no accounts information is available other than what is available through the Genetic Alliance UK accounts. However, on its own website it lists the following industry members whose membership costs £8,000 per company: Alexion, Baxter, Bio Marin, Celgene, CSL, Behring, Genzyme, GlaxoSmithKline, Novartis, Pfizer, Raptor, Shire, Sigma Tau, SOBI, UCB, Vertex, Viropharma. So it seems Rare diseases UK is entirely funded through industry and almost all of this goes to Genetic Alliance UK. Their accounts also give thanks to ‘Say Communications’ for their assistance in setting up rare Diseases UK on a pro-bono basis.
The accounts to 2014 for Genetic Alliance UK show a high proportion of their total income is received in restricted funds. In the year to 2014 only £3,992 of total grants receivable came in unrestricted funds, whilst £530,136 came in restricted funds for various projects led by the Genetic Alliance UK. At the end of the year this left a total of £611,511 in restricted grant income. This included £124,157 to RDUK from Aegerion, Alexion, Baxter, BioMarin, Celgene, CSL Behring, Genzyme, GlaxoSmithKline, Novartis, Pfizer, PTC Therapeutics, [[Raptor Pharmaceuticals, Shire, Sigma Tau, Sobi, UCB, Vertex, and Viropharma. A further £62,000 in restricted funds is brought in by the Risks & Benefits of New Medicines: Europe' project, with donations from Genzyme, GlaxoSmithKline, Pfizer, Roche, and UCB. A decline in restricted expenditure, meant £117,269 of restricted expenditure was carried forward alongside £85,892 of unrestricted reserves.
The result of this funding may have influenced Kent's opinion on patient involvement on the issue of drug prices, such as in the case of the drug Solaris, produced by Alexion. When he was asked why patient groups such as his shouldn't get involved in direct discussions about price – including pressuring pharma companies to lower their prices - Alastair Kent said Rare Diseases UK needed to stay out of these talks. He argued: 'We don't get involved in discussing the price because the price is a commercial decision negotiated with the government; we get involved in the clinical value of the medicine' and added 'the moment we start saying this is jolly expensive, we lose our independence'.
A Nexis search shows Alastair kent has a large media presence and has been cited in the media over 150 times representing the GIG/Genetic Alliance UK. An interesting evolution of thought is made apparent in this search. In fact Kent's opinion seems to undergo a complete reversal between articles and letters written between around 1993-1995 and 1996 onwards. In 1998 Kent argued that refusing to contemplate research involving experiments on fetuses destined for abortion may 'cut off a line of research which may be the best hope for some' sufferers of rare diseases.
Views on gene patenting 1993-1994
In 1993 Kent wrote a letter to the guardian arguing that 'The Department of Trade and Industry is proposing to permit the patenting of human genes outside the body. Such a move would block much of the progress towards an essential cure for genetic disorders in that it would stop the free flow of ideas and much collaboration between scientists. The Advisory Committee will not address this issue, and government policy is in danger of contradicting itself if it fails to establish a mechanism for reconciling the human, the technical and the agricultural issues raised by genetic technology'. This opinion does not seem to have changed much by 1994. For example, in an article in the Independent his view is portrayed as one of concern regarding the patenting process on converting genetic research into treatments:
There is a group in the US that has applied for a patent on the whole Y chromosome... That is an economic and political act to try and stop other people working in the area. Patents are granted only if their subject matter is novel. So scientists will become increasingly tight-lipped about their work if speaking at conferences or casual conversation with peers means putting a patent application at risk. It is this that most concerns representatives of patients and families affected by genetic disease. Alastair Kent, director of the Genetic Interest Group, which represents charities concerned with gene-based disorders, said the secrecy involved in patenting will slow down the translation of research into treatments. The group is not opposed to patenting of technologies associated with gene sequences, but to patenting of those sequences themselves. Mr Kent explained: If you think of a heart transplant, you need a bag to carry the heart from donor to recipient. The bag could be patented, but the heart could not. The same is true in genetics. To carry genes from one place to another you need some technology. That technology should be patentable but not the gene itself
Similarly in a letter Kent submitted to the Guardian entitled 'Patent error' in November 1994, he argues patents obstruct progress and even links gene patents to slavery in that they allow one person to hold property rights over another:
Recent advances in the scientific understanding of human genetics are offering the possibility of effective treatment and perhaps, in time, even a cure for some of the most terrible conditions that can afflict us. The research which has made this progress possible has often been funded by charities and support groups of those affected, and by the free flow of information between researchers and clinicians. The granting of patents will put major barriers in the way of further progress. It will hinder fundraising, raise costs and make co-ordinated research efforts much more difficult. Most genetic conditions are rare, affecting perhaps a few hundred families at most. Under such circumstances there is no "market" for treatment.
All that will happen is that the levels of return expected by venture capitalists will be such that the price of treatment will be beyond the stretched resources of the NHS. Surely this is the ultimate irony - that voluntary income pays for the research that makes possible the discovery that permits the patent that raises the price such that those who made it all possible are denied the hope of a cure because it is just too expensive.
Quite apart from this, there is the question of the ethical and moral objections that many have to the very idea that parts of the human body could be owned by a third party. It is 200 years since slavery was abolished. Are we going back to the position where it becomes acceptable for one person to have property rights over others?
The Council of Ministers is wrong in seeking to allow the patenting of human genes and every encouragement and support should be given to the European Parliament to continue to oppose them.
Genetic Interest Group.
Views on gene patenting 1997
By 1997 this view appears to have entirely reversed in his letter to the Guardian entitled 'Gene research needs patents'
Research into the genetic basis of disease provides hope of significant medical breakthroughs, especially for diseases such as cystic fibrosis or muscular dystrophy for which there is currently no cure, and, increasingly for common diseases like cancer and heart disease as well. It takes ten years and pounds 300m to develop a new medicine. No company will make investments of this magnitude if they can see their ideas copied by others unwilling to take the risk, so if we want to see research translated into treatment there must be proper protection. Patenting is the mechanism that has evolved over hundreds of years to provide this
Simlarly in an article for Nature in 1997 Kent now argued that patents reduce secrecy in scientific research:
Patents are granted to inventors to protect their inventions. In exchange for disclosing the invention to the public, the inventor has the right to prevent others from commercializing the invention for a limited period in a specific geographical area. Through disclosure by publication, patents actually reduce secrecy in scientific research. The research exemption provision, moreover, allows experimentation on a patented invention without infringement.
This opinion reversal no doubt played a huge role in the GIG controversy outlined above.
Genetic Screening and Insurance
Kent's position on the dangers posed by genetic screening also appear to have taken a dramatic change. In a number of early articles Kent stresses the dangers posed by genetic screening to people seeking certain forms of insurance. For example in an article written for the Independent in 1996 Kent writes:
Just as information about your genetic make-up gives you control over aspects of your life, so that same information in the wrong hands will give others power over you. Employers might, for example, want to know if female applicants had an increased risk of breast cancer, so they could choose not to employ them. Insurance companies might not want to provide cover for people at an increased risk of developing long-term diseases such as Alzheimer's. People with a genetic predisposition to certain forms of heart disease might not be able to afford to protect the payments on their mortgage because of the loaded premiums demanded. Genetics will have an impact on all our lives. Scientific advances are coming too quickly for us to assimilate. Last summer, the Commons Select Committee on Science and Technology produced a report on the implications of our new knowledge. The report was widely welcomed and many urged the Government to act quickly, implement its recommendations and introduce powerful and effective monitoring and control to
prevent the abuse of genetic information. On Wednesday, the Government rejected virtually all the recommendations in the report, preferring to rely on existing mechanisms which, in the view of the Select Committee and others, are already inadequate...by turning its back on legislation, the Government has gone further and created a positive incentive to discriminate early, because it will not be possible for employers, insurers or any other service provider to do so once symptoms are manifest. The Government's response on Wednesday amounts to a Discriminator's Charter
By July 2000 Kent's position had again reversed somewhat, he now argued that 'the fears that people have are genuine but overstated, and based on a misunderstanding of genetics' and 'that there are very few genes which give rise to serious illness without some form of environmental or lifestyle factor'. Similarly in a 2004 article he is cited as saying 'Insurers have bought into the hype about genetics and its predictive powers in a wider range of situations than is actually the case'. It is unclear whether his role on the Association of British Insurers' genetics committee influenced this later opinion, which seeks to downplay the risks of genetic screening towards attaining insurance and more generally.
- 1973-1982 - Careers Advisor in Norfolk, Cambridge and North Yorkshire
- 1980-1999 - Trustee - Skill: National Bureau for Students with Disabilities
- 1981-1999 - Trustee - Muscular Dystrophy Group
- 1982-1986 - Principal - Banstead Place, Queen Elizabeth's Foundation for Disabled People
- 1986-1989 - Director of Education, Employment and Residential Services - Royal National Institute for Deaf People
- 1989-1993 - Director - Action for Blind People
- 1991-1995 - Trustee - Change: Council of People with Learning and Sensory Disabilities
- 1992-1995 - Trustee - HAISCOM (Hearing and Sight Impaired Communication)
- 1992-1998 - Trustee - United Response
- 1993-1994 - Associate (visiting) Professor - Worcester Polytechnic Institute, USA
- 1993-Present - Director - Genetic Alliance UK (the UK alliance of support organisations for patients and families affected by genetic disorders, formerly the Genetic Interest Group)
- 1993-Present - Committee Member - European Alliance of Genetic Support Group
- 1994-1998 - Trustee - National Deaf Children's Society
- 1995-1998 - Committee Member - BMA Ethics and Genetics Working Party
- 1996-1999 - Committe member - North Thames RHA Community Genetics Steering Group
- 1996-2002 - Member of the editorial Board - the Patients' Network
- 1996-2006 - Justice of the Peace - Cambridge PSD
- 1996-Present - Committee member - Association of British Insurers, Genetics Advisory Committee
- 1997-Present - Committee member of the Medical Genetics Committee - Royal College of Physicians (Now Joint Committee of the Royal College of Physicians, RCPath and British Society for Human Genetics)
- 1998 - Member of the Judgin Panel - 'Golden Helix' NHS Quality Awards
- 1998-Present - Board member and founder - European Platform for Patient Organisations Science and Industry (EPPOSI)
- 2000-2006 - Patient Representative Orphan Medicinal Products Committee -European Medicines Agency (EMEA)
- 2002-2006 - Non-Executive Director - Cambridge City NHS Primary Care Trust
- 2002-2011 - Committee member - Human Genetics Commission
- 2002-2012 - Committee member - Department of Health, Genetics Commissioning Advisory Group (GenCAG)
- 2003-2004 - Member - EU STRATA Group on Genetic Testing
- 2003-Present - Steering Committee member - UK Genetics Testing Network, Department of Health
- 2004-2005 - Ethics Committee - International HapMap Project
- 2004-2009 - Task Force member - European Commission Rare Diseases
- 2004-2009 - Ethics Committee - Public Population Projects in Genetics (P3G)
- 2006-2012 - Chair - European Platform for Patient Organisations Science and Industry (EPPOSI)
- 2006-2012 - Advisory Board Member - 'CliniGene' NoE International
- 2007-2013 - Ethics Committee - '1000 Genomes' International Project
- 2008-2011 - Committee member - Committee on Advanced Therapies for the EMEA
- 2009-Present - Committee member - Gene Therapy Advisory Committee for the Department of Health
- 2009-Present - Chair and founder - Rare Disease UK
- 2010-Present - Committee member - European Union Committee of Experts in Rare Diseases
- 2011-Present - Vice Chair - Patient and Public Engagement in directly commissioned services for the Transitional Oversight Group in the new NHS
- 2011-Present - Committee member - Human Genome Strategy Group for the Department of Health, Education and Training and Commissioning sub committees
- 2012-2013 - National Commissioning Board Specialist Services Commissioning Innovation Fund Task & Finish Group (Specialised Services Commissioning Innovation Fund, SSCIF)
- 2013 - Present - Task & Finish Group on improving access to medicines for patients with rare diseases - Scottish Medicines Consortium
- 2013 - Present - Ethics Advisory Committee - Genomics England
- 2013 - Present - Forum member - Department of Health Rare Disease Stakeholder Forum
- 2013 - Present - Advisory Group - NHS England, Rare Diseases Advisory Group
- 2014 - Present - Chair - Department of Health Rare Disease Stakeholder Forum
- Fellow of the Royal Society of Medicine
- Senior Fellow - Public Health Genomics Foundation
- OBE for services to healthcare (2011)
- 1963-1970 - Birkenhead School - 5 GCE Olevels and 4 A Levels
- 1970-1973 - BA Hons (Natural Sciences) - University of Cambridge
- 1974-1976 - Diploma in Careers Guidance - Newcastle Polytechnic
- 1976-1977 - MA (Nat Sciences) - University of Cambridge
- 1976-1979 - M Phil (Research) - Hatfield Polytechnic
- 1989-1991 Post Graduate Certificate in Management - Open University
- Alastair Kent, 'Ethical aspects of the legal protection of biotechnological inventions and the principle of non-ownership of the human body', Bull Medical Ethics, January 1997, No. 124, pp. 32-3.
- Alastair Kent, ‘Harmonising European patent Practice’, Nature: International Weekly Journal of Science, 17 April 1997 , Volume 386(6626).
- Alastair Kent, ‘Patients + research = result! The role of patients and their interest groups in biomedical research’, Embo reports, 1 August 2002, Volume 3(8), pp. 707-8.
- F. Kavalier, & Alastair Kent, 'Genetics and the general practitioner', BMJ, 5 July, Volume 327(7405), pp. 2-3.
- Alastair Kent, ‘We can change the future: Is genetic testing a powerful tool for determining the health prospects of our children?’, EMBO Reports, September 2005, Volume 6(9), pp. 801-4.
- Alastair Kent & Dr Pritti Mehta, 'Genetic Interest Group (GIG) response to proposal to end cousin marriage', BioNews, 12 December 2005.
- Bartha Knoppers & Alastair Kent, ‘Policy barriers in coherent population-based research’, Nature Reviews genetics, 8 January 2006, Volume 7(1).
- Bartha Knoppers & Alastair Kent, ‘Tool-sharing issues in coherent population-based research’, Nature Reviews Genetics, February 2006, Volume 7(2).
- Alastair Kent, ‘Patients and IP: Should we Care?’, Script-Ed, December 2006, Volume 3(4).
- S. Shepperd, P. Farndon, V. Grainge, S. Oliver, M. Parker, R. Perera, H. Bedford, D. Elliman, Alastair Kent, P. Rose, 'DISCERN-Genetics: quality criteria for information on genetic testing', European Journal of Human Genetics, November 2006, Volume 14(11), pp. 1179-88.
- Alastair Kent, ‘Should patient groups accept money from drug companies? Yes’, BMJ (Clinical research edition), 5 May 2007, Volume 334(7600).
- Alastair Kent et. al., 18 October 2007, 'A second generation human haplotype map of over 3.1 million SNPs', Nature, 18 October 2007, Volume 449(7164), pp. 851-61.
- [[Alastair Kent & C. Oosterwijk, 'A patient and family perspective on gene therapy for rare diseases', Journal of Genetic Medicine, October 2007, Volume 9(10), pp. 922-3.
- C. Lewis, P. Mehta, Alastair Kent, H. Skirton, D. Coviello, 'An assessment of written patient information provided at the genetic clinic and relating to genetic testing in seven European countries', European Journal of Human Genetics, October 2007, Volume 15(10), pp. 1012-22.
- Alastair Kent et. al., 18 October 2007, 'Genome-wide detection and characterization of positive selection in human populations', Nature, 18 October 2007, Volume 449(7164), pp. 913-8.
- D. A. Coviello, H. Skirton, N. Ceratto, C. Lewis, Alastair Kent, 'Genetic testing and counselling in Europe: health professionals current educational provision, needs assessment and potential strategies for the future', European Journal of Human Genetics, December 2007, Volume 15(12), pp. 1203-4.
- Alastair Kent, ‘Non-invasive prenatal diagnosis: Public and patient perceptions’, Seminars in Fetal and Neonatal Medicine, Volume 13(2), April 2008.
- C. Lewis, Alastair Kent, H. Skirton, D.Coviello, 'EuroGentest patient information leaflets: a free resource available in over 20 languages', European Journal of Human Genetics, June 2009, Volume 17(6), p 732.
- Alastair Kent, 'The case for integrated service delivery in the UK for patients with rare diseases', BioNews, 17 August 2009.
- Alastair Kent, ‘Prenatal diagnostics: how to define the boundaries of ethical practice? (A patient and family perspective on current issues and possibilities)’, Informa Healthcare, March 2010, Volume 4(2).
- Alastair Kent et. al. (not first named author), 'Challenges with advanced therapy medicinal products and how to meet them', Nat Rev Drug Discov, March 2010, Volume 9(3), pp. 195-201.
- Alastair Kent et. al. (not first named author), ‘Genetic education and the challenge of genomic medicine: development of core competences to support preparation of health professionals in Europe’, European Journal of Human Genetics, 5 May 2010, Volume 18(9).
- Alastair Kent et. al. (not first named author), ‘A map of human genome variation from population-scale frequencing’, Nature: International Weekly Journal of Science, 28 October 2010, Vol 467, 1061–1073.
- W.H. Rogowski, S.D. Grosse, J. John, H. Kääriäinen, Alastair Kent, U. Kristofferson, J. Schmidtke, 'Points to consider in assessing and appraising predictive genetic tests', Jounral of Community Genetics, December 2010, Volume 1(4), pp. 185-94.
- Alastair Kent, N. M. King, O. Cohen-Haguenauer, ‘Toward a Proportionate Regulatory Framework for Gene Transfer: A Patient Group-Led Initiative’, Human Gene Therapy, 2 February 2011, Volume 22(2), pp. 126-134.
- Susan Wallace & Alastair Kent, ‘Population biobanks and returning individual research results: mission impossible or new directions?’, Human Genetics, 5 June 2011, Volume 130(3).
- Alastair Kent et. al. (not first named author), ‘Safety of medicines and the use of animals in research’, The Lancet, July 2011, Volume 378(9786), pp. 127-128.
- Alastair Kent et. al. (not first named author), 'Research Priorities: ELSI 2.0 for genomics and society', Science, 11 May 2012, Volume 336(6082).
- Alastair Kent, 'An integrated map of variation from 1,092 human genomes: The 1000 Genomes project Consortium', Nature: International Weekly Journal of Science, 4 July 2012, Volume 491(7422).
- Alastair Kent, 'Commentary: Patients will need knowledgeable guidance', BMJ, 26 November 2013, Volume 347(6991).
- J. Sussex, P. Rollet, M. Garau, C. Schmitt, A. Kent, A. Hutchings, 'A pilot study of multicriteria decision analysis for valuing orphan medicines', Value Health, December 2013, Volume 16(8), pp. 1163-9.
- Brian O’Mahony, Alastair Kent & Segolene Ayme, 'Pfizer-sponsored satellite symposium at the European Haemophilia Consortium (EHC) Congress: Changing the policy landscape: haemophilia patient involvement in healthcare decision-making', European Journal of Haematology, 2014, Volume 92.
- J. Kaye, M. Hurles, H. Griffin, J. Grewal, M. Bobrow, N. Timpson, C. Smee, P. Bolton, R. Durbin, S. Dyke, D. Fitzpatrick, K. Kennedy, A. Kent, D. Muddyman, F. Muntoni, L.F. Raymond, R. Semple, & T. Spector, 'Managing clinically significant findings in research: the UK10K example', European Journal of Human Genetics, September, Volume 22(9), pp. 1100-4.
- F. Severin, P. Borry, M.C. Cornel, N. Daniels,F. Fellmann, S. Victoria Hodgson, H.C. Howard, J. John, H. Kääriäinen, H. Kayserili, A. Kent, F. Koerber, U. Kristoffersson, M. Kroese, C. Lewis, G. Marckmann, P. Meyer, A. Pfeufer, J. Schmidtke, H. Skirton, L. Tranebjærg, & W.H. Rogowski, 'Points to consider for prioritizing clinical genetic testing services: a European consensus Process oriented at accountability for reasonableness', European Journal of Human Genetics, 24 September 2014.
- K. Facey, A. Granados, G. Guyatt, A. Kent, N. Shah, G.J. van der Wilt, D. Wong-Rieger, 'Generating health technology assessment evidence for rare diseases', Int J Technol Assess Health Care, October 2014, Volume 30(4):416-22.
- See, 'Members of the UK Rare Diseases Stakeholder Forum', 22 November 2013, Department of Health, accessed 9 April 2015.
- Understanding Animal Research About Us, accessed 3 September 2013
- See 'Alastair Kent Profile', Progress Educational Trust, accessed 10 April 2015.
- See See 'From Third Sector, 11 February 1993', 13 February 2008.
- 'Alastair Kent OBE', Genetic Alliance UK, accessed 9 April 2015.
- See 'About the 1000 Genomes project', 1000 genomes website, accessed 10 April 2015.
- See 'Alastair Kent OBE', Genetic Alliance UK, accessed 9 April 2015.
- See Tom Wilkie, 'Charities join forces against patenting of human genes; Drug firms' actions 'could delay treatment for people suffering from genetic disorders, The Independent, 17 November 1993.
- See 'What we do', Rare Diseases UK, accessed 10 March 2015.
- See 'Report of Activity 2013', Rare Diseases UK, January 2014, accessed 10 April 2015.
- See 'Genetic Alliance UK accounts to March 2014', Charity Register, accessed 10 April 2015.
- See Andrew McConaghie, 'Soliris, the world’s most expensive drug: will NICE judge it affordable?', 13 August 2014, Pharmaphorum, accessed 10 April 2015.
- Based on a Nexis search for 'Alastair Kent' AND 'Genetic Interest Group' OR 'Genetic Alliance UK'
- See Aisling Irwin, 'Critics blast proposed experiments on pre-aborted fetuses', Calgary Herald (Alberta, Canada), 9 October 1998.
- See Alastair Kent, 'LETTERS: HOW A BLINKERED APPROACH MAY HAMPER GENETIC OPPORTUNITIES', The Guardian, 22 July 1993.
- See Susan Watts, 'The genetic goldrush; The genes in your body couldn't possibly belong to someone else . . . could they? Susan Watts reports on the battle by some scientists to claim their very own stake in the stuff of life', The Independent, 27 April 1994.
- See Alastair Kent, 'LETTER: PATENT ERROR', The Guardian, 14 November 2014.
- See Alastair Kent, 'Letter: Gene research needs patents', The Independent, 6 July 1997.
- See Alastair Kent, ‘Harmonising European patent Practice’, Nature: International Weekly Journal of Science, 17 April 1997 , Volume 386(6626).
- Alastair Kent, 'Let's hope it's not in our genes; By failing to control the use of genetic data, the Government will encourage discrimination, says Alastair Kent', The Independent, 12 January 1996.
- Direct quote cited in Richard Miles, 'What if your genes don't make the grade?', The Times, 1 July 2000.
- Richard Miles, 'What if your genes don't make the grade?', The Times, 1 July 2000.
- James Hopegood, 'A POWERFUL group of scientists will next week try to stop the creation of a new underclass of people unable to get insurance', Daily Mail, 4 February 2004.
- All dates taken from either: Alastair Kent 'Curriculum Vitae', Europa website, accessed 9 April 2015, unless otherwise indicated, OR 'Alastair Kent OBE', Genetic Alliance UK, accessed 9 April 2015.
- See 'Alastair Kent OBE', Genetic Alliance UK, accessed 9 April 2015.
- See 'Alastair Kent OBE', Genetic Alliance UK, accessed 9 April 2015.
- See 'Alastair Kent OBE', Genetic Alliance UK, accessed 9 April 2015.