Human genetic banking: Altruism, benefit and consent

New Genetics and Society

Volumn 23, Issue 1, 2004, Pages 89-103

  Williams, Garrath ^a   Schroeder, Doris ^b  

^a LANCASTER UNIVERSITY   (United Kingdom)

^b UNIVERSITY OF CENTRAL LANCASHIRE   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ALTRUISM; CLINICAL STUDY; CONFIDENTIALITY; DATA BASE; ETHICS; HUMAN; HUMAN GENETICS; INFORMED CONSENT; LIFESTYLE; MEDICAL RESEARCH; MOTIVATION; PHARMACOGENOMICS; POPULATION GENETICS; PRIORITY JOURNAL; REVIEW;

BIOMEDICAL AND BEHAVIORAL RESEARCH; GENETICS AND REPRODUCTION;

ALTRUISM; BIOLOGICAL SPECIMEN BANKS; DATA COLLECTION; DATABASES, GENETIC; DISCLOSURE; GENETIC PRIVACY; GENETICS, POPULATION; GREAT BRITAIN; HUMANS; INFORMED CONSENT; PHARMACOGENETICS; REFUSAL TO PARTICIPATE; RESEARCH SUBJECTS;

BETULACEAE;

EID: 2442486847     PISSN: 14636778     EISSN: None     Source Type: Journal    
DOI: 10.1080/1463677042000189598     Document Type: Review

References (39)

1. AstraZeneca (2000) Memorandum: Evidence to the Select Committee on Science and Technology 〈www.publications.parliament.uk/pa/ld199900/ ldselect/ldsctech/115/115we07.htm〉.
2. Bell, J. (2000) Memorandum: Evidence to the Select Committee on Science and Technology 〈www.publications.parliament.uk/pa/ld199900/ldselect/ ldsctech/115/115we50.htm〉.
3. Berg, K. & Chadwick, R. (2001) Solidarity and equity: new ethical frameworks for genetic databases, Nature Reviews 2, pp. 318-21.
4. Bingham, R. (2001) A database of the innocent?, Splice, 7(2-3), pp. 8-9.
5. Brody B. A. (2001) A historical introduction to the requirement of obtaining consent from research participants. In Doyal, Len & Tobias, Jeffrey S. (eds) Informed Consent in Medical Research, pp. 7-14 (London: BMJ Books).
6. Brown, A.L. (2001) A confidential con job, Times Higher Education Supplement 1489, 1 June.
7. Chadwick, R. (1999) The Icelandic database: do modern times need modern sagas?, British Medical Journal, 319, pp. 441-4.
8. Chadwick, R. (2001) Informed consent and genetic research. In Doyal, Len & Tobias, Jeffrey S. (eds) Informed Consent in Medical Research, pp. 203-10 (London: BMJ Books).
9. Clarke, A. (2001) Genetic counselling. In Chadwick, Ruth (ed) Ethics of New Technologies, pp. 131-46 (San Diego, CA: Academic Press).
10. Clarke, A., English, V., Harris, H. & Wells, F. (2001) Ethical considerations, International Journal of Pharmaceutical Medicine, 15, pp. 89-94.
11. Department of Health (2000) Memorandum: Evidence to the Select Committee on Science and Technology 〈www.publications.parliament.uk/pa/ld199900/ ldselect/ldsctech/115/115we17. htm〉.
12. Department of Health (2001) Milburn Promises Reforms After Alder Hey Inquiry and Pays Tribute to Parents, News Desk 〈www.doh.gov.uk/newsdesk/ latest/4-naa-30012001.htm〉.
13. Dyer, C. (2001a) Use of confidential data helps convict former prisoner, British Medical Journal 322, p. 633.
14. Dyer, C. (2001b) Scientists Fear Breach of Confidentiality will Threaten Research 〈www. guardian.co.uk/Archive/Article/0,4273,4153840,00.htm〉.
15. European Society of Human Genetics (Public and Professional Policy Committee) (2001) Data Storage and DNA Banking for Biomedical Research: Proposed Recommendations (draft consultation document) 〈www.eshg.org〉.
16. Glaxo Wellcome (2000) Memorandum: Evidence to the Select Committee on Science and Technology 〈www.publications.parliament.uk/pa/ld199900/ ldselect/ldsctech/115/115we24.htm〉.
17. Haraldsdottir, R. (2000) Fire and fury in Iceland, Science & Public Affairs, February, pp. 12-3.
18. House of Lords (Select Committee on Science and Technology) (2001) Human Genetic Databases: Challenges and Opportunities 〈www.publications. parliament.uk/pa/ld200001/ldselect/ ldsctech/57/5701.htm〉.
19. Kaye, J. (2002) UK Biobank: The Current State of Play. Presentation to the NorFA (Nordic Academy for Advanced Study) network on "The Ethics of Medical and Genetic Information", at its workshop in Lytham St Annes, 11 May.
20. Kaye, J. & Martin, P. (2000) Safeguards for research using large scale DNA collections, British Medical Journal, 321, pp. 1146-9.
21. King, D. (2000) Memorandum: Evidence to the Select Committee on Science and Technology 〈www.publications.parliament.uk/pa/ld199900/ldselect/ ldsctech/115/115we23.htm〉.
22. Lowrence, W. W. (2001) The promise of human genetic databases, British Medical Journal, 322, pp. 1009-10.
23. Martin, P. (2000) Memorandum: Evidence to the Select Committee on Science and Technology 〈www.publications.parliament.uk/pa/ld199900/ldselect/ ldsctech/115/115we52.htm〉.
24. Medical Research Council (2000) Memorandum: Evidence to the Select Committee on Science and Technology 〈www.publications.parliament.uk/pa/ ld199900/ldselect/ldsctech/115/115we32. htm〉.
25. North Cumbria Community Genetics Project (2000) Report 1996-2000 (Westlakes Research Institute).
26. North Cumbria Community Genetics Project (2001a) Further Information (Westlakes Research Institute).
27. North Cumbria Community Genetics Project (2001b) Informed Consent Form (Westlakes Research Institute).
28. O'Neill, O. (2002) Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press).
29. People, Science & Policy Ltd (2002) UK Biobank: A Question of Trust: A Consultation Exploring nd Addressing Questions of Public Trust. Report prepared for the Medical Research Council and the Wellcome Trust (London: People, Science & Policy).
30. Porter, T. (2000) Public Perceptions of the Collection of Human Biological Samples. Report prepared for the Medical Research Council and the Wellcome Trust (London: Cragg Ross Dawson).
31. Rose, H. (2001) The Commodification of Bioinformation: The Icelandic Health Sector Database (London: Wellcome Trust).
32. Spallone, P. & Wilkie, T. (2000) The research agenda in pharmacogenomics and biological sample collections, New Genetics and Society, 19, pp. 193-205.
33. The Royal Liverpool Children's Inquiry (2001) Summary and Recommendations 〈www. rlcinquiry.org.uk〉.
34. Weijer, C. & Emanuel, E.J. (2000) Protecting communities in biomedical research, Science, 289, pp. 1142-4.
35. Wellcome News (2000) A sample solution, Q3 - Wellcome News 24, pp. 10-11.
36. Wellcome Trust (2002) Draft Protocol for Biobank UK, February 〈www.welcome.ac.uk/en/1/ biovenpopprt.html〉.
37. Wolf, R. (2000) Made-to-measure-medicine. Quoted at BBC News Online 〈news.bbc.co.uk/hi/english/health/newsid_704000/704577.stm〉.
38. Womack, C. & Gray N.M. (2000) Human research tissue banks in the UK. National Health Service: laws, ethics, controls and constraints, British Journal of Biomedical Science, 57, pp. 250-3.
39. Yirrell, D.L., Robertson, P., Goldberg, D.J., McMenamin, J., Cameron, S. & Leigh Brown, A.J. (1997) Molecular investigation into outbreak of HIV in a Scottish prison, British Medical Journal, 314, pp. 1446-50.