Researching the Mental Capacity Act 2005: reflections on governance, field relationships, and ethics with an adult who did not consent

References

• Amit-Talai, Vered. 2000. “Introduction: Constructing the Field.” In Constructing the Field: Ethnographic Fieldwork in the Contemporary World, edited by Vered Amit-Talia, 1–18. London: Routledge.
   Google Scholar
• Appelbaum, Paul. 2010. “Consent in Impaired Populations.” Current Neurology and Neuroscience Reports 10 (5): 363–373. doi: 10.1007/s11910-010-0123-5
   Web of Science ®Google Scholar
• Atkinson, Paul, Amanda Coffey, Sara Delamont, John Lofland, and Lyn Lofland. 2001. “Editorial Introduction.” In Handbook of Ethnography, edited by Paul Atkinson, Amanda Coffey, Sara Delamont, John Lofland, and Lyn Lofland, 1–7. London: Sage.
   Google Scholar
• Banks, Sarah. 2008. “Ethics and Social Welfare: The State of Play.” Ethics and Social Welfare 2 (1): 1–9. doi: 10.1080/17496530801948861
   Google Scholar
• Berghmans, Ron, Donna Dickenson, and Ter Ruud Meulen. 2004. “Editorial: Mental Capacity: In Search of Alternative Perspectives.” Health Care Analysis 12 (4): 251–263 ( Special Issue: Mental Capacity: In Search of Alternative Perspectives). doi: 10.1007/s10728-004-6633-z
   PubMed Web of Science ®Google Scholar
• Blackman, Shane J. 2007. “Hidden Ethnography: Crossing Emotional Borders in Qualitative Accounts of Young People's Lives.” Sociology 41 (4): 699–716. doi: 10.1177/0038038507078925
   Google Scholar
• Boxall, Kathy, and Sue Ralph. 2001. “Research Ethics Committees and the Benefits of Involving People with Profound and Multiple Learning Disabilities in Research.” British Journal of Learning Disabilities 39 (3): 173–180. doi: 10.1111/j.1468-3156.2010.00645.x
   Web of Science ®Google Scholar
• Breden, T. M., and J. Volmann. 2004. “The Cognitive Based Approach of Capacity Assessment in Psychiatry: A Philosophical Critique of the MacCAT-T.” Health Care Analysis 12 (4): 273–283 ( Special Issue: Mental Capacity: In Search of Alternative Perspectives). doi: 10.1007/s10728-004-6635-x
   PubMed Web of Science ®Google Scholar
• Butler, Ian. 2002. “A Code of Ethics for Social Work and Social Care Research.” British Journal of Social Work 32 (2): 239–248. doi: 10.1093/bjsw/32.2.239
   PubMed Web of Science ®Google Scholar
• Charland, Louis C. 1998. “Appreciation and Emotion: Theoretical Reflections on the MacArthur Treatment Competence Study.” Kennedy Institute of Ethics Journal 8 (4): 359–376. doi: 10.1353/ken.1998.0027
   PubMed Web of Science ®Google Scholar
• Charland, Louis C. 2001. “Mental Competence and Value: The Problem of Normativity in the Assessment of Decision-making Capacity.” Psychiatry, Psychology and Law 8 (2): 135–145. doi: 10.1080/13218710109525013
   Google Scholar
• Charland, Louis. 2011. “Decision-Making Capacity.” http://plato.stanford.edu/entries/decision-capacity/.
   Google Scholar
• Department for Constitutional Affairs. 2007. The Mental Capacity Act: Code of Practice, 2007. London: The Stationery Office.
   Google Scholar
• Department of Health. 2008. “Guidance on Nominating a Consultee for Research Involving Adults Who Lack Capacity to Consent.” London. http://www.manchester.gov.uk/download/downloads/id/12218/guidance_on_nominating_a_consultee_for_research_involving_adults_who_lack_capacity_to_consent.pdf.
   Google Scholar
• Department of Health. 2009. “The Mental Capacity Act—Fact Sheet for Social Scientists.” Accessed June 3, 2015. http://www.scie.org.uk/publications/mca/files/mcafactsheet.pdf.
   Google Scholar
• Department of Health. 2008. “Guidance on Nominating a Consultee for Research Involving Adults Who Lack Capacity to Consent.”
   Google Scholar
• Department of Health. 2015a. “Mental Capacity Act 2005 and Consent for Research.” Accessed June 3, 2015. http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_079671.pdf.
   Google Scholar
• Department of Health. 2015b. Mental Health Act 1983: Code of Practice. London: The Stationery Office.
   Google Scholar
• Dingwall, Robert. 2008. “The Ethical Case Against Ethical Regulation in Humanities and Social Science Research.” 21st Century Society: Journal of the Academy of Social Sciences 3 (1): 1–12. doi: 10.1080/17450140701749189
   Google Scholar
• Dixon-Woods, M., and E. L. Angell. 2009. “Research Involving Adults Who Lack Capacity: How Have Research Ethics Committees Interpreted the Requirements?” Journal of Medical Ethics 35 (6): 377–381. doi: 10.1136/jme.2008.027094
   PubMed Web of Science ®Google Scholar
• Dobson, Catherine. 2008. Conducting Research with People Not Having the Capacity to Consent to Their Participation. Leicester: The British Psychological Society.
   Google Scholar
• Dunn, M. C., I. C. H. Clare, A. J. Holland, and M. J. Gunn. 2007. “Constructing and Reconstructing ‘Best Interests’: An Interpretative Examination of Substitute Decision-making Under the Mental Capacity Act 2005.” Journal of Social Welfare and Family Law 29 (2): 117–133. doi: 10.1080/09649060701666598
   Google Scholar
• Emanuel, Ezekiel J., and Jerry Menikoff. 2011. “Reforming the Regulations Governing Research with Human Subjects.” The New England Journal of Medicine 365 (12): 1145–1150. doi: 10.1056/NEJMsb1106942
   PubMed Web of Science ®Google Scholar
• Fetterman, David M. 1998. Ethnography: Step by Step. 2nd ed. Thousand Oaks, CA: Sage.
   Google Scholar
• Gillham, Bill. 2000. Case Study Research Methods. Real World Research. London: Continuum.
   Google Scholar
• Grubb, Andrew. 1998. “Who Decides? Legislating for Incapacitated Adults.” European Journal of Health Law 5 (3): 231–240. doi: 10.1163/15718099820522443
   PubMedGoogle Scholar
• Hammersley, Martyn. 2010. “Creeping Ethical Regulation and the Strangling of Research.” Sociological Research Online 14 (4): 16.
   Google Scholar
• Hammersley, Martyn, and Anna Traianou. 2011. “Moralism and Research Ethics: A Machiavellian Perspective.” International Journal of Social Research Methodology 14 (11): 379–390. doi: 10.1080/13645579.2011.562412
   Web of Science ®Google Scholar
• Hargreaves, Roger. 2010. Deprivation of Liberty Safeguards: An Initial Review of Implementation. London: Mental Health Alliance.
   Google Scholar
• Herring, Jonathan. 2009. “Losing It? Losing What?” The Law and Dementia Child and Family Law Quarterly 21 (1): 3–29.
   Google Scholar
• Higgs, Roger. 2004. “The Contribution of Narrative Ethics to Issues of Capacity in Psychiatry.” Health Care Analysis 12 (4): 307–316 ( Special Issue: Mental Capacity: In Search of Alternative Perspectives). doi: 10.1007/s10728-004-6638-7
   PubMed Web of Science ®Google Scholar
• House of Lords. 2014. Mental Capacity Act 2005: Post-legislative Scrutiny. London: The Stationery Office Limited.
   Google Scholar
• Hugman, Richard, Eileen Pittaway, and Linda Bartolomei. 2011. “When ‘Do no Harm’ Is Not Enough: The Ethics of Research with Refugees and Other Vulnerable Groups.” British Journal of Social Work 41 (7): 1271–1287. doi: 10.1093/bjsw/bcr013
   Web of Science ®Google Scholar
• Jenkins, Katrina. 2012. Mental Capacity and the Mental Capacity Act 2005: A Literature Review. London: Mental Health Foundation.
   Google Scholar
• Joint Committee of House of Lords and House of Commons. 2003. Draft Mental Incapacity Bill Volume 1. Vol. HL Paper 189-I; HC 1083-I. London: The Stationary Office.
   Google Scholar
• Ministry of Justice/Department of Health. 2008. Deprivation of Liberty Safeguards: Code of Practice to Supplement the Main Mental Capacity Act 2005 Code of Practice. London: The Stationary Office.
   Google Scholar
• Moye, Jennifer, and Daniel C. Marson. 2007. “Assessment of Decision-making Capacity in Older Adults: An Emerging Area of Practice and Research.” The Journals of Gerontology Series B: Psychological Sciences and Social Sciences 62 (1): P3–P11. doi: 10.1093/geronb/62.1.P3
   PubMed Web of Science ®Google Scholar
• Murphy, Elizabeth, and Robert Dingwall. 2001. “The Ethics of Ethnography.” In Handbook of Ethnography, edited by Paul Atkinson, Amanda Coffey, Sara Delamont, John Lofland, and Lyn Lofland, 339–351. London: Sage.
   Google Scholar
• Murphy, Elizabeth, and Robert Dingwall. 2007. “Informed Consent, Anticipatory Regulation and Ethnographic Practice.” Social Science & Medicine 65 (11): 2223–2234. doi: 10.1016/j.socscimed.2007.08.008
   PubMed Web of Science ®Google Scholar
• Myron, Rowan, and Jayasree Kalathil. 2008. Engaging with Minority Black and Ethnic Communities about the Mental Capacity Act 2005. London: Mental Health Foundation.
   Google Scholar
• Nicholls, Stuart G., Jamie Brehaut, and Raphael Saginur. 2012. “Social Science and Ethics Review: A Question of Practice Not Principle.” Research Ethics 8 (2): 71–78. doi: 10.1177/1747016112445435
   Google Scholar
• Owen, S. Gareth, Fabian Freyenhagen, Genevra Richardson, and Mathew Hotopf. 2009. “Mental Capacity and Decisional Autonomy: An Interdisciplinary Challenge.” Inquiry 52 (1): 79–107. doi: 10.1080/00201740802661502
   Web of Science ®Google Scholar
• Parker, Jonathan, Bridget Penhale, and David Stanley. 2011. “Research Ethics Review: Social Care and Social Science Research and the Mental Capacity Act 2005.” Ethics and Social Welfare 5 (4): 388–400. doi: 10.1080/17496535.2011.594448
   Google Scholar
• Pollock, Kristian. 2012. “Procedure Versus Process: Ethical Paradigms and the Conduct of Qualitative Research.” BMC Medical Ethics 13 (25): 1–12.
   PubMed Web of Science ®Google Scholar
• Schrag, Zachary M. 2011. “The Case Against Ethics Review in Social Sciences.” Research Ethics 7 (4): 120–131. doi: 10.1177/174701611100700402
   Google Scholar
• Sexton, Martin. 2012. “Assessing Capacity to Make Decisions About Long-Term Care Needs: Ethical Perspectives and Practical Challenges in Hospital Social Work.” Ethics and Social Welfare 6 (4): 411–417. http://dx.doi.org/10.1080/17496535.2012.735817.
   Google Scholar
• Shaw, Ian F., and Nick G. Gould. 2001. “Fieldwork Choices in Context.” In Qualitative Research in Social Work, edited by Ian F. Shaw and Nick G. Gould, 135–156. London: Sage.
   Google Scholar
• Stake, Robert E. 1995. The Art of Case Study Research. Thousand Oaks, CA: Sage Publications.
   Google Scholar
• Stalker, Kirsten. 1998. “Some Ethical and Methodological Issues in Research with People with Learning Difficulties.” Disability and Society 13 (1): 5–19. doi: 10.1080/09687599826885
   Web of Science ®Google Scholar
• Sturman, Edward D. 2005. “The Capacity to Consent to Treatment and Research: A Review of Standardized Assessment Tools.” Clinical Psychology Review 25 (7): 954–974. doi: 10.1016/j.cpr.2005.04.010
   PubMed Web of Science ®Google Scholar
• Thomson, Rachel, Robert Bell, Janet Holland, Sheila Henderson, Sheena McGrellis, and Sue Sharpe. 2002. “Critical Moments: Choice, Chance and Opportunity in Young People's Narratives of Transition.” Sociology 36 (2): 335–354.
   Google Scholar
• Wiles, Rose, Graham Crow, and Helen Pain. 2011. “Innovation in Qualitative Research Methods: A Narrative Review.” Qualitative Research 11 (5): 587–604. doi: 10.1177/1468794111413227
   Web of Science ®Google Scholar
• Winick, Bruce J., and Kenneth W. Goodman. 2006. “A Therapeutic Jurisprudence Perspective on Participation in Research by Subjects with Reduced Capacity to Consent: A Comment on Kim and Appelbaum.” Behavioral Sciences and the Law 24 (4): 485–494. doi: 10.1002/bsl.703
   PubMed Web of Science ®Google Scholar
• Winick, Bruce J. 1995. “The Side Effects of Incompetency Labeling and the Implications for Mental Health Law.” Psychology, Public Policy, and Law 1 (1): 6–42. doi: 10.1037/1076-8971.1.1.6
   PubMed Web of Science ®Google Scholar
• World Medical Association. 2015. “Declaration of Helsinki.” Accessed May 29, 2015. http://www.wma.net/en/30publications/10policies/b3/.
   Google Scholar
• Yin, Robert K. 2009. Case Study Research: Design and Methods. Applied Social Research Methods. 4th ed. Vol. 5. Los Angeles, CA: Sage Publications.
   Google Scholar