Civil rights principles underpin the involvement of people with learning disabilities in research in U.S. study


Involving people with learning disabilities in research that affects them is part of the tradition of engaging with communities to ensure that there is ‘nothing about us without us’ – a key plank of the valuing people strategy in the UK.

This U.S. study set out to consider how academics understand the best way to include people with learning disabilities in research. The researchers wanted to explore beliefs in the scientific community about how to conduct ethically strong research with adults learning disabilities.

They looked at the views of researchers and of the members of ethics review boards to explore the ethical principles underpinning what happened and the practices that followed.

They set up four focus groups that included 17 researchers and ethics review board members and asked the people taking part to talk about how to ethically conduct research. They wanted to know from participants what they thought were the relevant factors to consider, the appropriate ways to address ethical concerns, and the role of ethical and civil rights principles.

What they found from analysis of the focus group discussions was:

  • support for the use of ethical principles
  • support for models of disability promoting inclusion in research,
  • focus on researchers’ interpersonal skills and relationships to participants
  • questions about best approaches to recruitment, consent, and compensation,
  • strategies to promote participation in research.

The authors suggest that their findings reflect a

socio-ecological model of disability, civil rights-based interpretations of ethical principles, the provision of accommodations as an ethical imperative, the potential benefits of promoting relationships between researchers and persons with intellectual and developmental disabilities, and the need for dialogue between researchers and ethics review board members.

“There is No Black or White”: Scientific Community Views on Ethics in Intellectual and Developmental Disability Research, McDonald, K. and Patka, M. , in Journal of Policy and Practice in Intellectual Disabilities, 9: 206–214

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John Northfield

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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