The aims of the original study referred to in this paper were to explore the information needs of people with learning disabilities with respect to consent for genomic tests, and to identify ways of facilitating informed consent for such tests. In this research methods review paper, we consider the ethical issues involved in recruitment for our study and describe the process of recruiting vulnerable participants via gatekeepers. We discuss the ethical issues under the themes ‘freedom from coercion’, ‘disclosure of information’ and ‘competence’. In conclusion, we acknowledge the paradox that exists in learning disability research: the importance of protecting members of a vulnerable group against the need to include people with a learning disability in order to gather the best possible evidence. However, a focus on wider inclusion will result in a more robust body of knowledge concerning the health and welfare of people with learning disabilities.
BeauchampTLChildressJF (2009) Principles of Biomedical Ethics, New York: Oxford University Press.
2.
BellugiULichtenbergerLJonesW (2001) The neurocognitive profile of Williams syndrome: A complex pattern of strengths and weaknesses. In: BellugiUSt. GeorgeM (eds) Journey from Cognition to Brain to Gene: Perspectives from Williams Syndrome, Cambridge, MA: The MIT Press, pp. 8–10.
3.
CalveleyJ (2012) Including adults with intellectual disabilities who lack capacity to consent in research. Nursing Ethics19(4): 558–567.
4.
CameronLMurphyJ (2007) Obtaining consent to participate in research: The issues involved in including people with a range of learning and communication disabilities. British Journal of Learning Disabilities35: 113–120.
5.
CarlsonL (2013) Research ethics and intellectual disability: Broadening the debates. Yale Journal of Biology and Medicine86: 303–314.
ChappellAL (1994) A question of friendship: Community care and the relationships of people with learning difficulties. Disability and Society9: 419.
8.
ClareICHGudjonssonGH (1993) Interrogative suggestibility, confabulation, and acquiescence in people with mild learning disabilities (mental handicap): Implications for reliability during police interrogations. British Journal of Clinical Psychology32: 295–301.
9.
CleaverSOuellette-KuntzHSakarA (2010) Participation in intellectual disability research: A review of 20 years of studies. Journal of Intellectual Disability Research54: 187–193.
10.
DaltonAJMcVillyKR (2004) Ethics guidelines for international, multicenter research involving people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities1: 57–70.
Emerson E, Hatton C, Robertson J, et al. (2012) Improving health and lives: Learning disabilities observatory. People with learning disabilities in England 2012. Available at: https://www.improvinghealthandlives.org.uk/numbers/howmany/ (accessed 15 August 2014).
15.
FeldmanMABosettJColletC (2014) Where are persons with intellectual disabilities in medical research? A survey of published clinical trials. Journal of Intellectual Disability Research58: 800–809.
16.
FishTRRabidouxPOberJ (2006) Community literacy and friendship model for people with intellectual disabilities. Mental Retardation44: 443–446.
17.
FisherCBCeaCDDavidsonPW (2006) Capacity of persons with mental retardation to consent to participate in randomized clinical trials. American Journal of Psychiatry163: 1813–1820.
18.
General Medical Council (2010) Good practice in research and consent to research. Available at: www.gmc-uk.org/guidance/research_guidance (accessed 27 January 2011).
19.
GoldsmithLWoodwardVJacksonL (2013) Informed consent for blood tests in people with a learning disability. Journal of Advanced Nursing69: 1966–1976.
20.
HealLWSigelmanCK (1995) Response biases in interviews of individuals with limited mental ability. Journal of Intellectual Disability Research39: 331–340.
21.
IaconoT (2006) Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual and Developmental Disability31: 173–179.
22.
InglisPCookT (2011) Ten top tips for effectively involving people with a learning disability in research. Journal of Learning Disabilities and Offending Behaviour2: 98–104.
KeywoodKFlynnM (2006) Healthcare decision-making by adults with learning disabilities: Ongoing agendas, future challenges. Psychiatry5: 360–362.
25.
McClimensAAllmarkP (2011) A problem with inclusion in learning disability research. Nursing Ethics18: 633–639.
26.
McDonaldKEKidneyCAPatkaM (2013) ‘You need to let your voice be heard’: Research participants’ views on research. Journal of Intellectual Disability Research57: 216–225.
27.
McVillyKRDaltonAJ (2006) Commentary on Iacono (2006): Ethical challenges and complexities of including people with intellectual disability as participants in research. Journal of Intellectual and Developmental Disability31: 186–188.
MurphyGHClareICH (1995) Adults’ capacity to make decisions affecting the person: Psychologist’s contribution. In: BullRCarsonD (eds) Handbook of Psychology in Legal Contexts, Chichester: John Wiley.
31.
National Health and Medical Research Council, Australian Research Council and Australian Vice-Chancellors’ Committee (2007) National statement on ethical conduct in human research. Available at: http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e72.pdf (accessed 13 March 2015).
32.
NicholsonLColyerMCooperS-A (2013) Recruitment to intellectual disability research: A qualitative study. Journal of Intellectual Disability Research57: 647–656.
33.
Nind M (2008) Conducting qualitative research with people with learning, communication and other disabilities: methodological challenges. Available at: http://eprints.ncrm.ac.uk/491/ (accessed 3 March 2015).
34.
RobinsonWMUnruhBT (2011) The hepatitis experiments at the Willowbrook State School. In: EmanuelEJGradyCCCrouchRA (eds) The Oxford Textbook of Clinical Research Ethics, New York: Oxford University Press.
35.
RoperJMShapiraJ (2000) Ethnography in Nursing Research, Thousand Oaks: SAGE.
WehmeyerMLBoldingN (1999) Self-determination across living and working environments: A matched samples study of adults with mental retardation. Mental Retardation37: 353–363.
40.
WeindlingPJ (2011) The Nazi medical experiments. In: EmanuelEJGradyCCCrouchRA (eds) The Oxford Textbook of Clinical Research Ethics, New York: Oxford University Press.
41.
Wiles R, Crow G, Charles V, et al. (2007) Informed consent and the research process: Following rules or striking balances? Sociological Research Online 12. Available at: http://www.socresonline.org.uk/12/2/wiles.html (accessed 28 March 2015).
