UK

Resources

This page is intended to present key information on privacy and genetic research relevant to the UK. It contains links to key UK public attitudes surveys, reports from relevant organisations, and initial information on the concept of privacy in the UK. Please use the contact pages to make any suggestions or to inform us of any new research.

Eurobarometer

• Directorate General Press and Communication (2005) Social values, science and Technology (Special Eurobarometer 225/ Wave 63.1). EC Directorate General Research. Relevant questions: Q15.a.3, Q17.
• Gaskell, George et al (2006) European and Biotechnology in 2005: Patterns and Trends (Eurobarometer 64.3). London, London School of Economics. A report to the European Commission’s Directorate-General for Research. Relevant question: Q5.3.

Relevant Interests Expressed by the Public

Surveys giving some indication of public attitudes towards genetic privacy and/or bio-banking in the United Kingdom include:

Related to UK Biobank:

These are studies sponsored by organisations funding or supporting UKBiobank:

• Armstrong, V., Barnett, J., Cooper, H., Monkman, M., Moran-Ellis, J. and Shepherd, R. (2007) Public Perspectives on the Governance of Biomedical Research: A qualitative study in a deliberative context. London, Wellcome Trust. Research conducted by the University of Surrey on behalf of the Wellcome Trust.
• Barr, Michael (2006) I’m not Really Read Up on Genetics’: Biobanks and the Social Context of Informed Consent. BioSocieties 1, 251–262. Wellcome Trust funding was obtained for the study commented on.
• Busby, Helen (2004) Blood Donation for Genetic Research: Donor’s Narratives. In: R. Tutton and O. Corrigan (eds) Genetic Databases: Socio-ethical issues in the collection and use of DNA. London, Routledge. Grant from Wellcome Trust.
• Cragg Ross Dawson (2000) Public Perceptions of the Collection and Use of Human Biological Samples: prepared for the Wellcome Trust and the Medical Research Council. London, The Wellcome Trust.
• Department of Health (England & Wales)(2002) Consultation on Human Bodies, Human Choices: The law on human organs and tissue in England and Wales. Consultation Documents and Report available here.
• Hapgood, R., McCabe, C. and Shickle, D. (2004) Public Preferences for Participation in a large DNA Cohort Study: A discrete choice experiment. Sheffield Health Economics Series Discussion Paper Ref 04/5. Sheffield, The University of Sheffield.
• Haimes, Erica and Whong-Barr, Michael (2004) Levels and Styles of Participation in Genetic Databases: Case Study of the North Cumbria Community Genetics Project. In: R. Tutton and O. Corrigan (eds) Genetic Databases: Socio-ethical issues in the collection and use of DNA. London, Routledge. Wellcome Trust funding was obtained for the study commented on.
• Ipsos MORI (2007) The Use of Personal Health Information in Medical Research: General Public Consultation. Ipsos MORI. Research undertaken for the Medical Research Council.
• Opinion Leader Research (2003) Summary of the UK Biobank Consultation on the Ethics Governance Framework. Opinion Leader Research.
• People Science Policy Ltd (2002) BioBank UK: A Question of Trust: A consultation exploring and addressing questions of public trust, prepared for the Medical Research Council and the Wellcome Trust. London, People Science & Policy Ltd.
• People Science Policy Ltd (2003) UK Biobank Consultation on the Ethical and Governance Framework: prepared for the Wellcome Trust and the Medical Research Council. London, People Science & Policy Ltd.
• Smart, A. et al (2008) Social Inclusivity vs Analytical Acquity? A Qualitative Study of UK Researchers Regarding the Inclusion of Ethnic Groups in Biobanks  Medical Law International Vol. 9 No. 2
• UK Biobank Ethics and Governance Council (EGC) commissioned reports:
  • Sumner, J. (2007) Public attitudes to biobanks and related ethics and governance issues
  • Capps, B., Campbell, A. V. and Meulen, R. ter (2008) Access to the UK Biobank Resource: Concepts of the Public Interest and the Public Good.
  • Webster, A. et al (2008) Public attitudes to third party access and benefit sharing: their application to UK Biobank (Final Report).
• Williamson, Emma, Goodenough, Trudy, Kent, Julie and Ashcroft, Richard (2004) Children’s Participation in Genetic Epidemiology: Consent and Control. In: R. Tutton and O. Corrigan (eds) Genetic Databases: Socio-ethical issues in the collection and use of DNA. London, Routledge. Sponsored by Wellcome Trust as part of EPEG project.

Independent from UK Biobank or its funders:

• Cousins et al (2005) Public Perceptions of Biomedical Research: A survey of the general population in Ireland. Dublin, Health Research Board. Research undertaken on behalf of the Department of Health and Children, Republic of Ireland (not part of the UK).
• Dixon-Woods, M. et al (2008) Human Tissue and ‘the Public’: The Case of Childhood Cancer Tumour Banking. BioSocieties, Vol. 3, Issue 01, pp 57-80
• Dixon-Woods, M. et al (2008) Tissue Samples as ‘Gifts’ for Researchers: A qualitative study of families and professionals. Medical Law International Vol. 9 No. 2
• Goodson, M. L. & Vernon, B. G. (2004) A study of public opinion on the use of tissue samples from living subjects for clinical research. Journal of Clinical Pathology 54, 135–138.
• Haddow, Gill, Cunningham-Burley, Sarah, Bruce, Ann and Parry, Sarah (2004). Generation Scotland Preliminary Consultation Exercise 2003-2004: Public stakeholder views from focus groups and interviews. Edinburgh, ESRC Innogen Centre, University of Edinburgh. Research undertaken on behalf of Generation Scotland.
  
• Human Genetics Commission (2000-2001) Whose Hands on Your Genes Consultation.
  • Consultation Responses
  • Summary of Quantitative Tick-box Section
• Jack, A. L. and Womack, C. (2003) Why Surgical Patients Do Not Donate Tissue for Commercial Research: Review of Records. British Medical Journal 327, 262.
• Levitt, Mairi and Weldon, Sue (2005) A Well Placed Trust?: Public perceptions of the governance of DNA databases. Critical Public Health, 15(4), 311–321. Research undertaken as part of the EC funded ELSAGEN project.
• MORI Social Research (2001) Public Attitudes to Human Genetic Information: People’s Panel Quantitative Survey conducted for the Human Genetics Commission. London, Human Genetics Commission.
• Nuffield Council on Bioethics (2007) The forensic use of bioinformation: ethical issues (Final Report). London, Nuffield Council on Bioethics. To download the Consultation Document and Responses, click here.
• Richards, M. P. M et al (2003) Issues of Consent and Feedback in a Genetic Epidemiological Study of Women with Breast Cancer. Journal of Medical Ethics, 29, 93–96.
• Weldon, Sue (2007) “UK” in Mätti Hayry, Ruth Chadwick, Vilhjálmur Árnason and Gardar Árnason (Eds.) The Ethics and Governance of Human Genetic Databases: European Perspectives. Cambridge, Cambridge University Press.

Relevant Interests Expressed in Different Contexts

Studies on Medical Information:

• Barrett, G., Cassell, J. A., Peacock, J. L. and Coleman, M. P. (2006) National Survey of British Public’s Views on use of Identifiable Medical Data by the National Cancer Registry. British Medical Journal, 332, 1068-1072.
• NHS Information Authority, Consumers Association and Health Which? (2002) Share With Care! Birmingham, NHS Information Authority.
  
• Robling, M. R., Hood, K., Houston, H., Pill, R., Fay, J and Evans, H. M. (2004) Public attitudes towards the use of primary care patient record data in medical research without consent: a qualitative study. Journal of Medical Ethics 30, 104-109.
  
• Shickle et al (2002) Patient Electronic (Health) Record: Information and Consent (PERIC Report). ScHARR, University of Sheffield.
• Scottish Consumer Council (2005) Health On-line – Public Attitudes to Data Sharing in the NHS (Scotland).
• Stone et al (2005) Sharing patient data: competing demands of privacy, trust and research in primary care. BritishJournal of General Practice 55, 783-789.
• Which? (2003) Health Which: Public Views on Electronic Health Records. NHS NPfIT.

Studies on Taking Part in Social Research

• Reeves, A., Bryson, C., Ormston, R and White, C. (2007) Children’s Perspectives on Participating in Survey Research. Research for the National Centre for Social Research (NatCen).
  
• Graham, J., Grewal, I. and Lewis, J. (NatCen) (2007) Ethics in Social Research: The views of research participants. Research for the Government Social Research Unit.

Researchers

• Goulding et al (2003) Adherence to published ethical guidelines by the UK genetic research community. Correspondence. Nature Genetics 34(2), 117-119.

Science

• People Science & Policy (2008) Public Attitudes to Science 2008: A Survey (Report prepared for Research Councils UK and the Department for Innovation, Universities and Skills). Wiltshire, Research Councils UK.

Human Tissue Act/Organ Retention

• The Bristol Royal Infirmary Inquiry into the management of care of children receiving complex heart surgery (1999-2002) Evidence.
• The Human Tissue Authority holds public consultations on new advisory documents.

Studies on Health Care

• Calnan, M., Montaner, D. and Horne R. (2005) How acceptable are innovative health-care technologies? A survey of public beliefs and attitudes in England and Wales. Social Science & Medicine 60, 1937–1948. Funded by the Medical Research Council’s Health Services Research Collaboration.

Studies on Privacy or Data Sharing

• Eurobarometer (2008) Flash Eurobarometer 225: Data Protection in the European Union: Citizen’s Perceptions.
• The House of Lords Select Committee on Constitutional Affairs ran a consultation on The Impact of Surveillance and Data Collection upon the Privacy of Citizens and their Relationship with the State in 2007 in preparation for a report (still pending).
• MORI (2003) Privacy and Data Sharing. Conducted for the Department of Constitutional Affairs.
• Ooman, I and Leenes, R (2008) The PRIME survey - a study regarding privacy attitudes and behaviour of students in the Netherlands, Flanders and the UK. Conducted on behalf of the PRIME Project (Privacy and Identity Management for Europe)
• OPM (2005) Understanding Attitudes Towards the Use and Sharing of Personal Datasets by Public Bodies. Conducted for the Council for Science and Technology.

Organisations and Industry Reports

• The Academy of Medical Sciences (2006) Personal Data for Public Good: using health information in medical research. Supported by Cancer Research UK.
• British Bioindustry Association (2003) Position Paper on UK Biobank.
• Council for Science and Technology (2005) Better Use of Personal Information: Opportunities and Risks.
• Gillott, J (2006) Human Rights, Privacy and Medical Research: Analysing UK Policy on Tissue and Data. Report for the Genetic Interest Group.
• HM Inspector of Anatomy (2004) The Investigation of Events that followed the death of Cyril Mark Isaacs.
• House of Parliament Science & Technology Committee (2001) Fourth Report on Human Genetic Databases. London, The Parliament Stationery Office. Written Evidence for the Report.
• Human Genetics Commission (2002) Inside Information.
• Information Commissioner released a Public Discussion Document on the Surveillance Society, and published a report, research undertaken by the Surveillance Studies Network. Available here.
• Redfern, Michael et al (2001) The Royal Liverpool Children’s Hospital Inquiry Report HC12-II.
• Royal Academy of Engineering (2007) Dilemmas of Privacy and Surveillance Report: Challenges of Technological Change. London, Royal Academy of Engineering.
• UK Evaluation Forum (2006) Medical Research: Assessing the benefits to society. Supported by the Academy of Medical Sciences, the MRC and The Wellcome Trust.

Privacy

• Seminal works include John Stuart Mill On Liberty, and John Locke Of Civil Government.
• Raymond Wacks is a leading author on privacy in the UK, publishing published The Protection of Privacy in 1980, Personal Information, Privacy and the Law in 1989, edited Privacy Volumes 1 and 2 in 1993, and wrote Privacy and Press Freedom: Rights in Conflict in 1995.
• Charles D. Raab co-wrote The Governance of Privacy: Policy Instruments in Global Perspective with Colin J. Bennett (Canada) in 2006.
• Graeme Laurie wrote Genetic Privacy in 2002.
• Bingham, T. ‘Should there be a law to protect rights of personal privacy?’, 1996 E.H.R.L.R. 450
• Markesinis, B. (Ed.), Protecting Privacy, Clifford Chance Lectures Vol IV. Oxford University Press, 1999.
• Thomas, R. & Walport, M., Information Commissioner’s Office, ‘Data Sharing Review Report‘, ICO, July 2008

Useful Links

• Genewatch UK Timeline on UK Biobank, webpage on UK Police National DNA Database
• Human Genetics Alert, independent UK public interest watchdog group.
• Liberty (or the National Council for Civil Liberties) monitors use of genetic data in the UK police national DNA database.
• PHG Foundation (working to achieve the responsible and evidence-based application of biomedical science for health)
• Privacy International (privacy watchdog) webpage on DNA and Genetic Privacy.
• UK Biobank Ethics and Governance Council (EGC)
• UK information from PRIVIREAL (data protection)

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