Stored Genetic Material: Use in Research in the United Kingdom

The use of stored genetic material depends on how it was obtained and the consent that was given by the original person. If that person was fully informed and consented to the material being used in research, it is lawful to use it in research following guidelines for ethical conduct. If consent was not or cannot be obtained, the tissue may be used in research but the research should be done only on anonymized and unlinked samples, subject to ethical approval.

Keywords: stored tissue; consent; access; research; commercialization

 References
    ePath Alder Hey Report (2001) The Royal Liverpool Children's Inquiry Report, 30 January, 2001. http://www.rlcinquiry.org.uk/
    ePath Bristol Report (2000) The Inquiry into the Management of Care of Chil dren Receiving Complex Heart Surgery at The Bristol Royal Infirmary, Chair, Professor Ian Kennedy, Interim Report, May 2000; Final Report, July 2001. http://www.bristol-inquiry.org.uk/index.htm
    other Doodeward versus Spence (1908) 6 Commonwealth Law Reports 406, High Court of Australia.
    book Harris JW (1996) Property and Justice, pp. 351–359. Oxford, UK: Clarendon Press.
    ePath Human Tissue Authority, Code of Practice – Consent (Code 1, 2006) at http://www.hta.gov.uk/_db/_documents/2006-07-04_Approved_by_Parliament_-_Code_of_Practice_1_-_Consent.pdf
    Mason JK and Laurie GT (2001) Consent or property? Dealing with the body and its parts in the shadow of Bristol and Alder Hey. Medical Law Review 64(5): 710–729.
    other Moore versus Regents of the University of California (1990) 793 P 2d 479 California Supreme Court.
    book MRC (2001) Human Tissue and Biological Samples for use in Research (including Operational and Ethical Guidelines, 2004). London, UK: Medical Research Council.
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    other The Human Tissue Act (2004) An assessment of the Act and its implications for the specialties of clinical and laboratory genetics. Alison Hall, Anneke Lucassen, Gail Norbury, Heather Skirton, Alastair Kent, John Crolla (A working party of the Joint Committee on Medical Genetics of The Royal College of Physicians The British Society for Human Genetics The Royal College of Pathologist) JCMG Guidance on the Human Tissue Act 03.10.06.
    other Washington University versus William J Catalona et al. (2006) 437 Federal Supplement 2nd Series 985.
 Further Reading
    ePath Australian Law Reform Commission Report No 96 (2003) Essentially Yours: The Protection of Human Genetic Information in Australia. http://www.austlii.edu.au/au/other/alrc/publications/reports/96/
    other Chief Medical Officer, UK (2001) Organ Retention: Interim Guidance on Post-Mortem Examination. London, UK.
    other Council of Europe (1997) Convention on Human Rights and Biomedicine.
    Grubb A (1998) I, me, mine: bodies parts and property. Medical Law International 3: 299.
    book Hardcastle RJ (2006) "The development of clear legal principles is necessary to enable individuals to have effective control over separated human tissue and to enable the efficient use of such materials in medical research". In: Law and the Human Body: Property Rights, Ownership and Control. Oxford, UK: Hart Publishing.
    other Human Genetics Commission, UK (October–December 2000) Public Attitudes to Human Genetic Information.
    other Human Genome Organisation Ethics Committee (1998) Statement on DNA Sampling: Control and Access. London, UK.
    book Kennedy I and Grubb A (2000) Medical Law, 3rd edn. London, UK: Butterworths.
    book Laurie G (2002) Genetic Privacy. A Challenge to Medico-legal Norms. Cambridge University Press, http://www.cambridge.org/catalogue/catalogue.asp?isbn=0521660270
    book Magnusson RS (1998) "Proprietary rights in human tissue". In: Palmer N and McKendrick E (eds) Interests in Goods, 2nd edn. London, UK: Lloyds of London Press.
    book Morgan D (2001) Issues in Medical Law and Ethics, pp. 83–104. London, UK: Cavendish.
    book MRC (2000) Public Perceptions of the Collection of Human Biological Samples. London, UK: Medical Research Council.
    book National Health and Medical Research Council (1998) National Statement on Ethical Conduct in Research involving Humans. Australia: Canberra.
    other Nuffield Council on Bioethics, UK (1995) Human Tissue, Ethical and Legal Issues. London, UK.
    Skene L (1998) Patients’ rights or family responsibilities? Two approaches to genetic testing. Medical Law Review 6: 1–41.
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Skene, Loane(Mar 2008) Stored Genetic Material: Use in Research in the United Kingdom. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005656.pub2]