How ethical is ethical research? Recruiting marginalized, vulnerable groups into health services research

Journal of Advanced Nursing

Volumn 62, Issue 2, 2008, Pages 248-257

  Smith, Linda J ^a  

^a ROBERT GORDON UNIVERSITY   (United Kingdom)

Author keywords

'responsible advocacy'; Drug use; Health services research; Health visiting; Inequalities in health; Nurses; Research ethics

Indexed keywords

ADDICTION; ARTICLE; COMMUNITY HEALTH NURSING; ETHICS; FEMALE; HEALTH SERVICES RESEARCH; HUMAN; INFORMED CONSENT; PATIENT ADVOCACY; PUERPERIUM; RESEARCH ETHICS; RESEARCH SUBJECT; STANDARD; VULNERABLE POPULATION;

COMMUNITY HEALTH NURSING; ETHICS, RESEARCH; FEMALE; HEALTH SERVICES RESEARCH; HUMANS; INFORMED CONSENT; PATIENT ADVOCACY; POSTPARTUM PERIOD; RESEARCH SUBJECTS; SUBSTANCE-RELATED DISORDERS; VULNERABLE POPULATIONS;

EID: 41649094572     PISSN: 03092402     EISSN: 13652648     Source Type: Journal    
DOI: 10.1111/j.1365-2648.2007.04567.x     Document Type: Article

References (56)

1. Beauchamp T.L. Childress J.F. (2001) Principles of Biomedical Ethics, 5th edn. New York, Oxford University Press.
2. BMJ (1996) Declaration of Helsinki. British Medical Journal 313, 1448 1449.
3. Cassell J. Young A. (2002) Why we should not seek individual informed consent for participation in health services research. Journal of Medical Ethics 28, 313 317.
4. Claveirole A. (2004) Listening to young voices: challenges of research with adolescent mental health users. Journal of Psychiatric and Mental Health Nursing 11, 253 260.
5. Central Office for Research Ethics Committees (2004) New Operational Procedures for NHS RECs. Guidance for Applicants to Research Ethics Committees. Department of Health, London.
6. Department of Health (2005) Research Governance Framework for Health and Social Care, 2nd edn. Department of Health, London.
7. Department of Health, Social Services and Public Safety (2006) Research Governance Framework for Health and Social Care, 2nd edn. DHSSPS, Northern Ireland.
8. 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.
9. Economic and Social Research Council (2006) Research Ethics Framework. Retrieved from http://www.esrcsocietytoday.ac.uk/ESRCInfoCentre/opportunities/ research_ethics_framework/ on 18 November 2007.
10. Edwards S.J.L., Kirchin S. Huxtable R. (2005) Research ethics committees and paternalism. Journal of Medical Ethics 30, 88 91.
11. Ensign J. (2003) Ethical issues in qualitative health research with homeless youths. Journal of Advanced Nursing 43 (1 43 50.
12. Entwistle V. (2005) Involving service users in health services research. In Handbook of Health Services Research Methods Investigation, Measurement and Analysis (Bowling A. Ebrahim S., eds Open University Press, Maidenhead, pp. 535 554.
13. Faugier J. Sargeant M. (1997) Sampling heard to reach populations. Journal of Advanced Nursing 26, 790 797.
14. Gilbert T. (2004) Involving people with learning disabilities in research: issues and possibilities. Health & Social Care in the Community 12 (4 298 308.
15. Green J. Thorogood N. (2004) Qualitative Methods for Health Research. Sage Publications, London.
16. Guba E.G. Lincoln Y.S. (1989) Fourth Generation Evaluation. Sage Publications, Newbury Park.
17. Hannigan B. Allen D. (2003) A tale of two cities: research governance issues arising from two ethnographic investigations into the organisation of health and social care. International Journal of Nursing Studies 40, 685 695.
18. Health Services Research Network (2006) NHS Research Ethics: A Guide to the New Service. NHS Confederation, London.
19. Hearnshaw H. (2004) Comparison of requirements of research ethics committees in 11 European countries for a non-invasive interventional study. British Medical Journal 328, 140 141.
20. Hewison J. Haines A. (2006) Overcoming barriers to recruitment in health research. British Medical Journal 333, 300 302.
21. Hofman N.G. (2004) Toward critical research ethics: transforming ethical conduct in qualitative health care research. Health Care for Women International 25, 647 662.
22. Hopkins V., Harvey E. O'Brien K. (2004) Advocacy for Drug Users. Scottish Executive Effective Interventions Unit, Edinburgh.
23. Information and Services Division (2004). Drug Misuse Statistics Scotland, 2003. Common Services Agency, Edinburgh.
24. Länsimies-Antikainen H., Pietilä A.-M., Laitinen T., Schwab U., Rauramaa R. Länsimies E. (2007) Evaluation of informed consent: a pilot study. Journal of Advanced Nursing 59 (2 146 154.
25. MacDonald H. (2006) Relational ethics and advocacy in nursing: literature review. Journal of Advanced Nursing 57 (2 119 126.
26. MacDuff C., McKie A., Martindale S., Rennie A.-M., West B. Wilcock S. (2007) A novel framework for reflecting on the functioning of research ethics review panels. Nursing Ethics 14 (1 99 116.
27. Mander R. (1992) Seeking approval for research access: the gatekeeper's role in facilitating a study of the care of the relinquishing mother. Journal of Advanced Nursing 17, 1460 1464.
28. National Research Ethics Service (2007a) Differentiating Audit, Service Evaluation and Research. Retrieved from http://www.nres.npsa.nhs.uk/docs/ guidance/Is_and_As_Differentiating_Research.pdf on 23 August 2007.
29. National Research Ethics Service (NRES) (2007b) NHS Research Ethics Committee Application Form, version 5.4, Question A24. Retrieved from https://www.nresform.org.uk/AppForm/display/login.asp?b=1 on 23 August 2007.
30. National Research Ethics Service (2007c) Question Specific Guidance on the NRES Application Form. Retrieved from http://www.nres.npsa.nhs.uk/docs/ guidance/Question-specific_guidance.pdf on 18 November 2007.
31. RESPECT Project (2004) RESPECT Code of Practice for Socio-Economic Research. Retrieved from http://www.respectproject.org/code/ on 18 November 2007.
32. Richardson A. (2007) Ethics? Whose ethics? A Report on a Consultation Day. National Patient Safety Agency. Retrieved from http://www.nres.npsa.nhs.uk/ applicants/index.htm on 18 November 2007.
33. Rogers W.A. (2004) Evidence based medicine and justice: a framework for looking at the impact of EBM on vulnerable or disadvantaged groups. Journal of Medical Ethics 30, 141 145.
34. Royal College of Nursing (2004) Research Ethics. RCN Guidance for Nurses. RCN, London.
35. Schüklenk U. (2000) Protecting the vulnerable: testing times for clinical research. Social Sciences and Medicine 51, 969 977.
36. Scottish Executive Health Department (2002) Choices and Challenges. The Strategy for Research and Development in Nursing and Midwifery in Scotland. Scottish Executive, Edinburgh.
37. Scottish Executive Health Department (2003a) Getting Our Priorities Right: Good Practice Guidance for Working with Children and Families Affected by Substance Misuse. Scottish Executive, Edinburgh.
38. Scottish Executive Health Department (2003b) For Scotland's Children. Better Integrated Children's Services. Scottish Executive, Edinburgh.
39. Scottish Executive Health Department (2006) Research Governance Framework for Health and Community Care, 2nd edn. Scottish Executive, Edinburgh.
40. Smith L. Gibb S. (2007) Postnatal support for drug users: evaluation of specialist health visiting service. Community Practitioner 80 (7 24 29.
41. Social Research Association (2003) Ethical Guidelines. Retrieved from http://www.the-sra.org.uk/documents/pdfs/ethics03.pdf on 18 November 2007.
42. SPSS Inc. (1999) Reference Guide. SPSS, Chicago.
43. Steel R. (2004) Involving Marginalised and Vulnerable People in Research: A Consultation Document. Retrieved from http://www.invo.org.uk/pdfs/ Involving%20Marginalised%20and%20VullGroups%20in%20Researchver2.pdf on 18 November 2007.
44. Steinke E.E. (2004) Research ethics, informed consent and participant recruitment. Clinical Nurse Specialist 18 (2 88 95.
45. Tannahill C. (2005) Health and health policy. In Exploring Social Policy in the 'New' Scotland, Chapter 8 (Mooney G. Scott G., eds The Policy Press, Bristol, pp. 199 220.
46. Tee S.R. Lathlean J.A. (2004) The ethics of conducting a co-operative inquiry with vulnerable people. Journal of Advanced Nursing 47 (5 536 543.
47. Templeton L., Zohhadi S., Galvani S. Velleman R. (2006) 'Looking Beyond Risk': Parental Substance Misuse: Scoping Study. Scottish Executive, Edinburgh.
48. Tod A.M., Nicolson P. Allmark P. (2002) Ethical review of health service research in the UK: implications for nursing. Journal of Advanced Nursing 40 (4 379 386.
49. Truman C. Raine P. (2001) Involving users in evaluation: the social relations of user participation in health research. Critical Public Health 11 (3 215 229.
50. Ulrich C., Wallen G. Grady C. (2002) Research vulnerability and patient advocacy: balance-seeking perspectives for the clinical nurse scientist? Editorial Nursing Research 51 (2 71 72.
51. Uys L.R. (2006) Are ethics committees always ethical? International Journal of Ethics Committees 12, 1 2.
52. Welsh Assembly Government (2001) Research Governance Framework for Health and Social Care in Wales. Welsh Assembly Government, Wales.
53. World Health Organisation (1994) Lexicon of Alcohol and Drug Terms Published by the World Health Organisation. Retrieved from http://www.who.int/ substance_abuse/terminology/who_ladt/en/index.html on 18 November 2007.
54. World Health Organization (2004) Neuroscience of Psychoactive Substance Use and Dependence. World Health Organization, Geneva.
55. World Medical Association (2000) Declaration of Helsinki Ethical Principles for Medical Research Involving Human Subjects. 52nd WMA General Assembly, Edinburgh. Retrieved from: http://ohsr.od.nih.gov/guidelines/helsinki. html on 18 November 2007.
56. Wright S., Klee H. Reid P. (1998) Interviewing illicit drug users: observations from the field. Addition Research 6 (6 517 527.