Ethical Considerations in Disability Research and Safeguarding
- Justice – this means, to quote Aristotle, to treat like cases alike and unalike cases unalike – be fair;
- Beneficence – this means, try to help people, do the right thing;
- Non-maleficence – this means, do no harm, don’t deceive people;
- Autonomy – this means respect for persons, supporting people’s choices, listening to them.
- Think about possible harms or benefits, and minimise any distress caused. For example, it may be traumatic to recall past difficulties. Can you support people afterwards or refer them to services which might support them?
- You might avoid doing research, when it’s already been done or it’s unnecessary. Do you have to do it with this group? Are you asking ‘need to know’ or ‘want to know’ questions? In some contexts, people with disabilities may be fed up of other people’s questions, especially if they never get to hear the results of the research.
- You need to avoid raising expectations of future benefits of the research, and this means you may need to manage expectations when they agree to participate in your study. Many people participate in research because they feel it will benefit them or their child in some way, even when you say that it will not directly help them.
- If there are no services available, then screening a population to find out who has particular service needs may not be ethical: it raises expectations which cannot be met. Or you need to ensure services are put in place: the slogan of “no survey without service” is worth remembering!
- The same people with disabilities often spend all their time participating in multiple studies, and they get sick of answering questions – try and find someone who has not been involved before.
- Will there be any reprisals or retribution to adults or children who might be involved? Are safeguarding protocols in place for vulnerable adults and children; Have a clear plan for responding to safety concerns. This is also touched upon briefly in the course in the section on ‘conducting research’ with children
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Global Disability: Research and Evidence
- The participant should understand what the research is about. This means full information, but also communication that is accessible to people.
- When people have hearing impairment or visual impairment, it is simply about ensuring that their preferred means of communication – speech, sign language, braille, file – is available, that they have read, understood and remembered the study, and can give consent through written, oral or sign language.
- It is more complicated if they have intellectual disabilities or are children. You need to assess their capacity to understand consequences of the study and provide permission to participate. You should provide simplified versions of the information sheet and consent form which they can understand.
- If they still lack capacity to participate, then they cannot be included in most studies, and you will have to see if a caregiver can participate on their behalf.
- Children who can understand may still be too young to give legally valid consent, so you may have to rely on their caregivers giving permission for the child to participate. But you still need to have the child’s assent, because you need to try and ensure they understand why they are being asked to participate in the research.
- The participant is entitled to say no. Participation must be voluntary. The adult or child can withdraw at any stage. There should be no negative consequences either for participating, or for not participating. They should not be ‘bribed’ to participate.
- If potential participants are hard to involve but do not actually say ‘no’, it may be that they don’t want to take part but it is a culturally impolite to say no, especially to western researchers: remember the Swahili proverb “The one who chases you away doesn’t tell you to go”. Are you aware of children or adults’ dissent, and do you respect it?
- Often, research in non-western cultural contexts requires community consent, not just individual consent. Do what is expected locally – but also be aware of individuals who may want to take part, but are spoken for by others.
- Some questions can be answered in focus groups, but often people don’t want to disclose private information to others, particularly if the information is sensitive in nature, so a one to one interview would be better for this type of information.
- People should ideally have privacy, for example when they are talking to an interviewer in a one to one interview, or filling in a survey with a enumerator. In some contexts, this can be really difficult.
- Others may want to speak for people with disabilities, but it’s best to hear from the person themselves.
- If the person is deaf and has an interpreter, they are likely to be a family member, possibly a child: is it appropriate to ask very personal questions?
- Find a place where no one is listening, possibly arrange a distraction activity for parents or other children, or interview parents in one place and children in another place, at the same time.
- Children may choose to be accompanied in the interview, for example by a friend or sibling: that is something you should plan for.
- People should not be identifiable in any publications from the research, so anonymise transcripts as soon as they are checked, removing not just names but also identifying details – for example, many impairments are rare, so it’s harder for people with disabilities to be anonymise if you include the exact diagnosis.
- However, children and adults should know that you have a moral duty to help them disclose abuse to relevant authorities, so tell them your duty of confidentiality does not mean ignoring stories of abuse (look at childethics.com for more advice about safeguarding).
Global Disability: Research and Evidence
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