Skip to main content
SpringerLink
Log in

Informed Consent

  • Chapter
  • First Online:
Handbook of Intellectual Disabilities

Part of the book series: Autism and Child Psychopathology Series ((ACPS))

Abstract

Taking from pre-modernist, modernist and post-modernist perspectives, this chapter traces the history of consent theory, demonstrating how deprivation and infringement of the rights for many people, especially those with intellectual disabilities, has occurred. A focus on the rise of bioethics is explored in relation to autonomy and self-determination of intellectually disabled individuals. Readers are invited to think of informed consent as not only an approach to personal rights but also as augmenting inclusion in society. Taking this approach, processes and interactions are presented which recognise the simplicity and multifactorial nature of informed consent, with the authors placing emphasis on communicative interactions, which require active involvement of those involved. In this vein, people with intellectual disability are viewed as active agents central to decision-making when providing informed consent and require support within the context of trusting and respectful relationships. Ultimately, this chapter provides insight for creative discussions which focus on the enablement of intellectually disabled people to provide informed consent for their life choices.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 349.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 449.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 449.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

Notes

  1. 1.

    Status approach determining that capacity related to intellectual functioning and IQ singularly

  2. 2.

    Functional approach

References

  • Appelbaum, P. S. (2007). Assessment of patients’ competence to consent to treatment. The New England Journal of Medicine, 357, 1834–1840.

    Article  Google Scholar 

  • Arnardóttir, O. M., & Quinn, G. E. (2009). The UN convention on the rights of persons with disabilities: European and Scandinavian perspectives (Vol. 100). Leiden/Boston, FL: BRILL.

    Book  Google Scholar 

  • Assisted Decision Making (Capacity) Act. (2015). Number 64 of 2015, Dublin: Stationary Office, [online], Retrived from http://www.irishstatutebook.ie/eli/2015/act/64/enacted/en/print.html. Accessed 5 May 2017.

  • Atherton, H., & Gates, B. (2007). A history of learning disabilities. Edinburgh: Churchill Livingstone.

    Google Scholar 

  • Atkinson, J. M. (2007). Advance directives in mental health: Theory, practice and ethics. Jessica Kingsley Publishers.

    Google Scholar 

  • Bach, M. and Kerzner, L. (2010). A New Paradigm for Protecting Autonomy and the Right to Legal Capacity Prepared for the Law Commission of Ontario. The Ontario Law Commission, Canada, [online], Retrived from https://www.lco-cdo.org/wp-content/uploads/2010/11/disabilities-commissioned-paper-bach-kerzner.pdf. Accessed 6 Apr 2018.

  • Barnes, C., & Mercer, G. (2010). Exploring disability a sociological introduction. Cambridge: Polity Press.

    Google Scholar 

  • Beauchamp, T. L., & Childress, J. F. (1979). Principles of biomedical ethics. Oxford: Oxford University Press.

    Google Scholar 

  • Beauchamp, T. L., & Childress, J. F. (2001). Principles of biomedical ethics (5th ed.). Oxford: Oxford University Press.

    Google Scholar 

  • Beauchamp, T. L., Walters, L. R., Kahn, J. P., & Mastroianni, A. C. (2008). Contemporary issues in bioethics. Wadsworth, OH: Thompson.

    Google Scholar 

  • Belmont Report. (1978). Ethical Principles and Guidelines for the protection of human subjects of research. National Institutes of Health (NIH) Maryland: Office of Human Subjects Research (OHSR).

    Google Scholar 

  • Berg, J. W., Appelbaum, P. S., Lidz, C. W., & Parker, L. S. (2001). Informed consent legal theory and clinical practice (2nd ed.). Oxford: Oxford University Press.

    Google Scholar 

  • Bigby, C., Fyffe, C., & Ozanne, E. (2007). Planning and support for people with intellectual disabilities: Issues for case managers and other professionals. London: Jessica Kingsley Publishers.

    Google Scholar 

  • Biggs, H. (2010). Healthcare research ethics and law: Regulation, review and responsibility. Abingdon: Routledge-Cavendish.

    Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.

    Article  Google Scholar 

  • Buchanan, A. E., & Brock, D. W. (1990). Deciding for others: The ethics of surrogate decision making. New York, NY/Cambridge: University Press.

    Book  Google Scholar 

  • Camoin, A., Dany, L., Tardieu, C., Ruquet, M. and Le Coz, P. (2018) Ethical issues and dentists’ practices with children with intellectual disability: A qualitative inquiry into a local French health network. Disability and Health Journal 11(3):412-419.

    Google Scholar 

  • Carey, E. (2010). Navigating the process of ethical approval: A methodological note. The Grounded Theory Review, 9(3), 19–32.

    Google Scholar 

  • Carey, E., & Griffiths, C. (2017). Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: Ethical and methodological considerations. Disability and Society, 32, 193–212.

    Article  Google Scholar 

  • Carlson, L. (2009). The faces of intellectual disability: Philosophical reflections. Bloomington, IN: Indiana University Press.

    Google Scholar 

  • Cifor, M. (2016). Affecting relations: Introducing affect theory to archival discourse. Archival Science, 16(1), 7–31. https://doi.org/10.1007/s10502-015-9261-5

    Article  Google Scholar 

  • de Haas, C., & Ryan, R. (2016). Chapter 4 family centered care. In L. Rubin, J. Merrick, D. E. Greydanus, & D. R. Patel (Eds.), Health care for people with intellectual and developmental disabilities across the lifespan (3rd ed., pp. 49–58). Switzerland: Springer International Publishing.

    Chapter  Google Scholar 

  • Department of Health, Social Services and Public Safety (DHSSPS). (2003). Seeking consent: Working with people with learning disabilities, [online], Retrived from http://www.dhsspsni.gov.uk/consent-guidepart4.pdf. Accessed 31 Oct 2014.

  • Department of Health, U. (2009). Valuing people now; A new three-year strategy for people with learning disabilities. London: Department of Health.

    Google Scholar 

  • Dougall, A., & Fiske, J. (2008). Access to special care dentistry, part 3. Consent and capacity. British Dental Journal, 205(2), 71–81.

    Article  Google Scholar 

  • Dye, L., Hare, D. J., & Hendy, S. (2007). Capacity of people with intellectual disabilities to consent to take part in a research study. Journal of Applied Research in Intellectual Disabilities, 20(2), 168–174.

    Article  Google Scholar 

  • Emerson, E. (2009). Estimating future numbers of adults with profound multiple learning disabilities in England. Tizard Learning Disability Review, 14(4), 49–55.

    Article  Google Scholar 

  • Fadan, R. R., & Beauchamp, T. L. (1986). A history and theory of informed consent. New York: Oxford University Press.

    Google Scholar 

  • Fletcher, G. P. (1978). Rethinking criminal law. Boston, FL: Little, Brown and Company.

    Google Scholar 

  • Fletcher, J. (1983). The evolution of the ethics of informed consent. In K. Berg & K. E. Tranoy (Eds.), Research ethics (pp. 187–228). New York, NY: A.R. Liss.

    Google Scholar 

  • Flynn, E., & Arstein-Kerslake, A. (2014a). The support model of legal capacity: Fact, fiction, or fantasy. Berkeley Journal of International Law, 32, 124.

    Google Scholar 

  • Flynn, E., & Arstein-Kerslake, A. (2014b). Legislating personhood: Realising the right to support in exercising legal capacity. International Journal of Law in Context, 10(01), 81–104.

    Article  Google Scholar 

  • Flynn, E., & Arstein-Kerslake, A. (2014c). The support model of legal capacity: Fact, fiction, or fantasy? Berkeley Journal of International Law, 32, 134–281.

    Google Scholar 

  • Gerrish, K., & Lacey, A. (2007). The research process in nursing (5th ed.). Oxford: Blackwell Publishing.

    Google Scholar 

  • Gilbert, T. (2004). Involving people with learning disabilities in research: Issues and possibiliites. Health and Social Care in the Community, 12, 298–308.

    Article  Google Scholar 

  • Goldbart, J. and Caton, S. (2010). Communication and people with the most complex needs: What works and why this is essential. Research Institute for Health and Social Change. The voice of learning disability. Mencap.

    Google Scholar 

  • Goldsmith, L., Skirton, H., & Webb, C. (2008). Informed consent to healthcare interventions in people with learning disabilities – An integrative review. Journal of Advanced Nursing, 64, 549–563.

    Article  Google Scholar 

  • Goldsmith, L., Woodward, V., Jackson, L., & Skirton, H. (2013). Informed consent for blood tests in people with a learning disability. Journal of Advanced Nursing, 69(9), 1966–1976.

    Article  Google Scholar 

  • Grove, S. K., Burns, N., & Gray, J. (2014). Understanding nursing research: Building an evidence-based practice. St. Louis, MO: Elsevier Health Sciences.

    Google Scholar 

  • Hacking, I. (1995). He looping effects of human kinds. In D. Premack & D. Sperber (Eds.), Causal cognition: A multidisciplinary debate (pp. 351–394). New York: Oxford University Press.

    Google Scholar 

  • Hall, D. E., Prochazka, A. V., & Fink, A. S. (2012). Informed consent for clinical treatment. Canadian Medical Association Journal, 184(5), 533–540.

    Article  Google Scholar 

  • Health Service Executive (HSE). (2011). Time to move on from congregated settings: a strategy for community inclusion-Report of the working group on congregated settings. Dublin: Health Service Executive.

    Google Scholar 

  • Herzog, D. (1989). Happy slaves a critique of consent theory. Chicago, IL: University of Chicago Press.

    Google Scholar 

  • Iacono, T. (2006). Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual and Developmental Disability, 31(3), 173–179.

    Article  Google Scholar 

  • Iacono, T., & Carling-Jenkins, R. (2012). The human rights context for ethical requirements for involving people with intellectual disability in medical research. Journal of Intellectual Disability Research, 56(11), 1122–1132.

    Article  Google Scholar 

  • Jonas, H. (1969). Philosophical reflections on experimenting with human subjects, ethical aspects of experimentation with human subjects. Daedalus, 98(2), 219–247.

    Google Scholar 

  • Kant, I. (1795). Perpetual peace: A philosophical sketch [online], Retrived from https://www.mtholyoke.edu/acad/intrel/kant/kant1.htm. Accessed 29 Apr 2017

  • Kaye, D. H. (2007). Revisiting ‘Dreyfus’: A more complete account of a. Trial by Mathematics.’ Minnesota Law Review, 91(3), 825–835.

    Google Scholar 

  • Kaye-Beall, K. (2016). Centre for Autism Suport and Training. ‘Circle of Support? This is the heart of Person-Centered Planning’ [online], Retrived from http://centerforautismsupportandtraining.com/self-direction/circles-of-support/. Accessed 6 Apr 2018

  • Kayess, R., & French, P. (2008). Out of darkness into light? Introducing the convention on the rights of persons with disabilities. Human Rights Law Review, 8(1), 1.

    Article  Google Scholar 

  • Klotz, J. (2004). All in the mind intellectual disability; Communicating across the divide, All in the mind [video], [online], Retrived from http://www.abc.net.au/radionational/programs/allinthemind/intellectual-disability-communicating-across-the/3425430. Accessed 19 Feb 2014.

  • Knibb, D. (2010). Establishing a procedure for managing poor standards of oral care in vulnerable and dependent adults. Journal of Disability and Oral Health, 11(1), 14–16.

    Google Scholar 

  • Krugman, S. (1986). The Willowbrook hepatitis studies revisited: Ethical aspects. Review of Infectious Diseases, 8(1), 157–162.

    Article  Google Scholar 

  • Lafferty, A., O’Sullivan, D., O’Mahoney, P., Taggart, L., & van Bavel, B. (2016). Family carers’ experiences of caring for a person with intellectual disability. Dublin: University College Dublin.

    Google Scholar 

  • Lai, R., Elliott, D., & Ouellette-Kuntz, H. (2006). Attitudes of research ethics committee members toward individuals with intellectual disabilities: The need for more research. Journal of Policy and Practice in Intellectual Disabilities, 3(2), 114–118.

    Google Scholar 

  • Lashewicz, B., Mitchell, J., Salami, E. and Samantha, C. (2014). Understanding and addressing voices of adults with disabilities within their family caregiving contexts; implications for capacity decision making and guardianship, Law Commission of Ontario, [online], Retrived from http://www.lco-cdo.org/capacity-guardianship-commissioned-paper-lashewicz.pdf. Accessed 5 May 2017

  • Lay, J., & Kirk, L. (2011). Chapter 9: Person centred strategies for planning. In H. Atherton & D. Crickmore (Eds.), Learning disabilities: Towards inclusion. Croydon: Elsevier Health Sciences.

    Google Scholar 

  • Lee, R. (1993). Doing research on sensitive topics. London: Sage.

    Google Scholar 

  • Levine, C. (2008). Taking sides clashing views on bioethical issues (12th ed.). New York, NY: McGraw Hill.

    Google Scholar 

  • Little, M., Paul, K., Jordens, C. F. C., & Sayers, E. J. (2000). Vulnerability in the narratives of patients and their carers: Studies of colorectal cancer. Health, 4(4), 495–510.

    Article  Google Scholar 

  • Llyes, E. (2018). Care-ful definition of consent. Journal of Health Psychology, 23(2), 277–288.

    Article  Google Scholar 

  • Macadam, A., & Savitch, N. (2015). Staying connected with circles of support. The Journal of Dementia Care, 23(1), 32–34.

    Google Scholar 

  • Manson, N. C., & O’Neill, O. (2007). Rethinking informed consent in bioethics. Cambridge: Cambridge University Press.

    Book  Google Scholar 

  • McDonald, K., Kidney, C., Nelms, S., Parker, M., Kimmel, A., & Keys, C. (2009). Including adults with intellectual disabilities in research: Scientists’ perceptions of risk and protections. Journal of Policy and Practice in Intellectual Disabilities, 6, 244–252.

    Article  Google Scholar 

  • McDonald, K. E., & Kidney, C. A. (2012). What is right: Ethics in intellectual disabilities research. Journal of Policy and Practice in Intellectual Disabilities, 9(1), 27–39.

    Article  Google Scholar 

  • Mental Capacity Act. (2005). Mental capacity Act (MCA) (2005) [online], Retrieved from www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf. Accessed 30 Sept 2014

  • National Institute of Health (NIH). (1994). Guideline on the inclusion of women and minorities as subjects in clinical research, [online], Retrived from http://grants.nih.gov/grants/guide/notice-files/not94-100.html. Accessed 31 Oct 2014.

  • National Institutes of Health (NIH). (2009). Research Involving Individuals with Questionable Capacity to Consent: Points to Consider’ [online], Retrived from https://grants.nih.gov/grants/policy/questionablecapacity.htm. Accessed 26 Mar 2018

  • Neill, M. and Sanderson, H. (2012). Circles of Support and Personalisation, [online], Retrived from http://www.allenshea.com/wp-content/uploads/2017/03/circlesofsupportandpersonalisation-3.pdf. Accessed 06 Apr 2018

  • Neves, P. M. (2004). Cultural context and consent: An anthropological view. Medicine, Health Care and Philosophy, 7, 93–98.

    Article  Google Scholar 

  • Nicholson, L., Colyer, M., & Cooper, S. A. (2013). Recruitment to intellectual disability research: a qualitative study. Journal of Intellectual Disability Research, 57(7), 647–656.

    Google Scholar 

  • Nuremberg Code. (1949). [Online], Retrived from www.nj.gov/health/irb/documents/nuremburg_code.pdf. Accessed 31 Oct 2014

  • Osuji, P. I. (2018). Relational autonomy in informed consent (RAIC) as an ethics of care approach to the concept of informed consent. Medicine, Health Care and Philosophy, 21, 101–111. https://doi.org/10.1007/s11019-017-9789-7

    Article  Google Scholar 

  • Parker, M. (2012). Caring for vulnerable ostomists: Learning disabilities and stoma care. British Journal of Nursing, (Stoma Care Supplement), 21(16), S4–S10.

    Google Scholar 

  • Parley, F. (2010). What does vulnerability mean? British Journal of Learning Disabilities, 39(4), 266–276.

    Article  Google Scholar 

  • Philips, A. (2016). Vulnerable adults with diabetes: Improving access to care. Practice Nursing, 27(6), 287–290.

    Article  Google Scholar 

  • Polit, D. F., & Beck, C. T. (2004). Nursing research: Principles and methods. Philadelphia, PA: Lippincott Williams & Wilkins.

    Google Scholar 

  • Pritchard, J. (2001). Good practice with vulnerable adults (Vol. 9). London: Jessica Kingsley Publishers.

    Google Scholar 

  • Quinn, G. (2011). Rethinking Personhood: New Directions in Legal Capacity Law & Policy. Lecture, University of British Columbia, Vancouver, 21(7) [online], Retrieved from Accessed 29 April 2011.

    Google Scholar 

  • Ramcharan, P. (2006). Ethical challenges and complexities of including vulnerable people in research: Some pre-theoretical considerations. Journal of Intellectual and Developmental Disability, 31(3), 183–185.

    Article  Google Scholar 

  • Ramsey, F. P. (1930). On a problem of formal logic. Proceedings of the London Mathematical Society, 2(30), 264–286.

    Article  Google Scholar 

  • Resch, J. A., Mireles, G., Benz, M. R., Grenwelge, C., Peterson, R., & Zhang, D. (2010). Giving parents a voice: A qualitative study of the challenges experienced by parents of children with disabilities. Rehabilitation Psychology, 55(2), 139.

    Article  Google Scholar 

  • Rogers, A. C. (1997). Vulnerability, health and health care. Journal of Advanced Nursing, 26(1), 65–72.

    Article  Google Scholar 

  • Rolfe, G. (2006). Validity, trustworthiness and rigour: Quality and the idea of qualitative research. Journal of Advanced Nursing, 53, 304–310.

    Article  Google Scholar 

  • Roy, A., Roy, A., & Roy, M. (2012). The human rights of women with intellectual disability. Journal of the Royal Society of Medicine, 105, 384–389. https://doi.org/10.1258/jrsm.2012.110303

    Article  Google Scholar 

  • Schalick, W., Westbrook, C., & Young, B. (2012). Communication with individuals with intellectual disabilities and psychiatric disabilities: A summary of the literature. Michigan Retirement Research Center Research Paper, 2012–2264.

    Google Scholar 

  • Sheerin, F. K. (2011). Intellectual disability nursing–responding to health inequity. British Journal of Learning Disabilities, 40(4), 266–271.

    Article  Google Scholar 

  • Smith, L. J. (2008). How Ehtical is Ehtical research? Recruiting marginalized, vulnerable groups into health services research. Journal of Advanced Nursing, 62(2), 248–257.

    Article  Google Scholar 

  • Stein, M. A. (2007). Disability Human Rights. California Law Review, 95(1), 75–121.

    Google Scholar 

  • Taua, C., Neville, C., & Hepworth, J. (2014). Research participation by people with intellectual disability and mental health issues: An examination of the processes of consent. International Journal of Mental Health Nursing, 23, 513–524.

    Article  Google Scholar 

  • The Office of the Public Advocate. (2014). A journey towards autonomy? Supported decision making in theory and practice. A review of the literature. Queensland: Queensland Government 22 November 2014.

    Google Scholar 

  • United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). (2006). [Online], Retrived from www.un.org/disabilities/convention/conventionfull.shtml. Accessed 15 June 2014

  • Veatch, R. M. (1972). Models for ethical medicine in a revolutionary age. Hastings Center Report, 2, 5.

    Article  Google Scholar 

  • Wark, S., MacPhail, C., McKay, K., & Müller, A. (2017). Informed consent in a vulnerable population group: Supporting individuals aging with intellectual disability to participate in developing their own health and support programs. Australian Health Review, 41(4), 436–442.

    Article  Google Scholar 

  • Werner, S., Tulchinsky, T. H., Gryga, I., Kovess-Masfety, V., Levav, I., & Pathare, S. (2012). Individuals with intellectual disabilities: A review of the literature on decision-making since the convention on the rights of people with disabilities (CRPD). Public Health Reviews, 34(2), 14.

    Article  Google Scholar 

  • Wiles, R. (2013). What are qualitative research ethics?’ In ‘the what is? (Research Methods Series). London: Bloomsbury Academic. https://doi.org/10.5040/9781849666558

    Book  Google Scholar 

  • Winston, A. S. (1998). Science in the service of the far right: Henry E. Garrett, the IAAEE, and the Liberty Lobby. Journal of Social Issues, 54(1), 179–210.

    Article  Google Scholar 

  • World Health Organisation (WHO). (2014). [Online], Retrived from http://www.unaids.org/sites/default/files/media_asset/201405_sterilization_en.pdf. Accessed 29 Apr 2017

  • Zero, D. T. (2004). Sugars: The arch criminal? Caries Research, 38(3), 277–285.

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Nursing and Midwifery, University of Limerick, Castletroy, Limerick, Ireland

    Eileen Carey & Ruth Ryan

Authors
  1. Eileen Carey
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Ruth Ryan
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Eileen Carey .

Editor information

Editors and Affiliations

  1. Department of Psychology, Louisiana State University, Baton Rouge, LA, USA

    Johnny L. Matson

Rights and permissions

Reprints and permissions

Copyright information

© 2019 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Carey, E., Ryan, R. (2019). Informed Consent. In: Matson, J.L. (eds) Handbook of Intellectual Disabilities. Autism and Child Psychopathology Series. Springer, Cham. https://doi.org/10.1007/978-3-030-20843-1_14

Download citation

Publish with us

Policies and ethics

Search

Navigation