964
Views
14
CrossRef citations to date
0
Altmetric
Original Articles

Do current consent and confidentiality requirements impede or enhance research with children with learning disabilities?

, &
Pages 273-287 | Published online: 20 Aug 2006

References

  • Alderson , P. 1995 . Listening to the children: children, ethics and social research , Barkingside : Barnardos .
  • Association of Research Centres in the Social Sciences/Social Research Association (ARCISS/SRA) . 2004 . Report on seminar on current developments in social science research ethics Available online at: http://www.the‐sra.org.uk/ethicals.htm (accessed 11 May 2005).
  • Becker , H. , Roberts , G. , Morrison , J. and Silver , J. 2004 . Recruiting people with disabilities as research participants: challenges and strategies to address them . Mental Retardation , 42 : 471 – 475 .
  • Black , N. 2003 . Editorial: privacy, data and health research . Journal of Health Services Research and Policy , 8 (Supplement 1) : 1
  • Booth , T. 1996 . “ Sounds of still voices: issues in the use of narrative methods with people who have learning difficulties ” . In Disability and society: emerging issues and insights , Edited by: Barton , L. London : Longman .
  • Boyd , K. M. 2004 . Beyond consent? . Journal of the Royal College of Physicians of Edinburgh , 34 : 290 – 295 .
  • British Psychological Society . 2004 . Code of conduct, ethical principles & guidelines Available online at: http://www.bps.org.uk (accessed May 2005).
  • British Sociological Association . 2002 . Statement of ethical practice for the British Sociological Association Available online at: http://www.britsoc.co.uk (accessed May 2005).
  • Carlson , R.V. , Boyd , K. M. and Webb , D. J. 2004 . The revision of the Declaration of Helsinki: past present and future . British Journal of Clinical Pharmacology , 57 : 695 – 713 .
  • Data Protection Act . 1998 . Available online at http://www.hmso.gov.uk (accessed May 2005).
  • Department of Health . 2001 . Seeking consent: working with people with learning disabilities Available online at: http://www.doh.gov.uk (accessed May 2005).
  • Doyal , L. 1997 . Informed consent in medical research: journals should not publish research to which patients have not given fully informed consent – with three exceptions . British Medical Journal , 314 : 1107
  • Economic and Social Data Service/Universities of Essex and Manchester . 2003–2004 . Legal and ethical issues in interviewing children Available online at: http://www.esds.ac.uk/aandp/create/guidelineschildren.asp (accessed May 2005).
  • Edwards , S. J. L. , Lilford , R. J. , Thornton , J. and Hewison , J. 1998 . Informed consent for clinical trials: in search of the ‘best’ method . Social Science & Medicine , 47 : 1825 – 1840 .
  • Fazackerley , A. 2004 . Top cancer expert, 91: ‘I’ll go to jail for science’ . Times Higher Education Supplement , February 27 : 1 – 8 .
  • Greig , A. and Taylor , J. 1999 . Doing research with children , London : Sage .
  • Harbour , A. 2004 . Understanding children and young people’s rights to confidentiality . Child and Adolescent Mental Health , 9 : 187 – 190 .
  • Harth , S. C. and Thong , Y. H. 1995 . Parental perceptions and attitudes about informed consent in clinical research involving children . Social Science & Medicine , 40 : 1573 – 1577 .
  • Hood , S. , Kelley , P. and Mayall , B. 1996 . Children as research subjects: a risky enterprise . Children & Society , 10 : 117 – 128 .
  • Kellett , M. , Forrest , R. and Dent , N. 2004 . ‘Just teach us the skills please, we’ll do the rest’: empowering ten‐year‐olds as active researchers . Children & Society , 18 : 329 – 343 .
  • Law Commission . 1995 . Mental incapacity , London : HMSO . (Report no. 231)
  • Lennox , N. , Taylor , M. , Rey‐Conde , T. , Bain , C. , Purdie , D. M. and Boyle , F. 2005 . Beating the barriers: recruitment of people with intellectual disability to participate in research . Journal of Intellectual Disability Research , 49 : 296 – 305 .
  • Lindsay , G. 2000 . “ Researching children’s perspectives: ethical issues ” . In Researching children’s perspectives , Edited by: Lewis , A. and Lindsay , G. Buckingham : Open University Press .
  • Lowrance , W.W. 2002 . Learning from experience , London : The Nuffield Trust .
  • Lowrance , W.W . 2003 . Learning from experience: privacy and the secondary use of data in health research . Journal of Health Services Research and Policy , 8 (Supplement 1) : 2 – 7 .
  • Mahon , A. , Glendinning , C. , Clarke , K. and Craig , G. 1996 . Researching children: methods and ethics . Children & Society , 10 : 145 – 154 .
  • Morrow , V. and Richards , M. 1996 . The ethics of social research with children: an overview . Children & Society , 10 : 90 – 105 .
  • Murphy , G. H. and Clare , I. C. H. 1997 . “ Consent issues ” . In Adults with learning disabilities , Edited by: O’Hara , J. and Sperlinger , A. Chichester : John Wiley and Sons Ltd .
  • Social Research Association . 2003 . Ethical guidelines Available online at: http://www.the‐sra.org.uk/ethicals.htm (accessed May 2005).
  • Stalker , K. , Carpenter , J. , Connors , C. and Phillips , R. 2004 . Ethical issues in social research; difficulties encountered gaining access to children in hospital for research . Child: Care, Health and Development , 30 : 377 – 383 .
  • Swain , J. , Heyman , B. and Gillman , M. 1998 . Public research, private concerns: ethical issues in the use of open‐ended interviews with people who have learning difficulties . Disability & Society , 13 : 21 – 36 .
  • Ward , H. , Cousens , S. , Smith‐Bathgate , B. , Leitch , M. , Everington , D. , Will , R. and Smith , P. 2004 . Obstacles to conducting epidemiological research in the UK general population . British Medical Journal , 329 : 277 – 279 .

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.