A friend of mine has just sent me a query asking about some
of the major ethical issues which become apparent when
research is conducted on disability issues. He has been
asked to be on an ethics committee. I wrote this reply,
which just contained my preliminary thoughts, but I had a
sense that I had neglected important matters, because I
just rushed the reply off. My friend is well aware of, and
thoroughly committed to, a social model approach, and uses
that as an ontological and epistemological standpoint.
However, he is interested in wider ethical issues about
research as well. I wonder if others could contribute to
the discussion?
This was my reply to him.
Here are my immediate thoughts when I think about disabled
people's concerns regarding ethics committees and their
decisions:
1. Informed Consent
This involves a few decisions on behalf of ethics
committees. eg. Does the person have the cognitive
capacity to consent? For instance, often ethics committees
are very medical model and when they hear someone has a
brain injury, they simply recommend going to that person's
parent, spouse or guardian. From a disability rights
perspective, do we want to accept these surrogates having
so much power? What ways can be used to ensure the genuine
consent of the individual concerned?
2. No Harm to Participants
* How vulnerable is this person, cognitively, emotionally,
mentally? Does this person have adequate supports to be
involved in a research project that may mean "spilling
their guts" on a heap of really emtional issues? If we are
serious about the ethical principle of no harm to
participants, then this requires careful thought. I am
thinking of certain vulnerable situations here, such as
someone with a cognitive impairment who is homeless,
someone who is incarcerated in a nursing home, or someone
who is in a psychiatric insitituion. They make great
"interview material" for a researcher, but who is really
focussed on the emotional health of the person? When the
researcher leaves after an hour or two, who is going to be
there for the person, as they deal with the emotional
aftermath of telling their story one more time?
3. Responsibilities back to Research Participants
Many researchers produce reports which are never seen by
the disabled people who are their subjects. There needs to
be an ethical requirement to present findings to research
participants, in some accessible way. After all, it is
these people who have been at the heart of the research
process?
4. Reinforcement of the right to withdraw
The nature of many impairments means that it may be
necessary to continually reinforce to the individual that
they have the right to withdraw at any time. Often, when a
disabled person becomes involved in research, they are
asked to re-tell terrible stories (eg abuse,
discrimination, etc). This may involve a number of visits
by the researcher. There is a potential conflict of
interest between a person who may be experiencing
emotionally difficult effects of the research, and the
researcher, who is reliant on the individual to get
"additional data". There needs to be additional safeguards
for the individual to withdraw if the process becomes too
diffficult emotionally.... once researchers have a signed
consent form, they rarely re-check if the person wants to
withdraw, or if the interview process is emotionally
painful.
5. Potential abuse of power
Is the person conducting the research in a position where
they are rendering services, or treating, or are in another
power position, relative to the disabled person? For
instance, has this person worked in the hospital where they
are conducting research and is there some degree of
informal power which will be still attached to that person
because of that position? Will the people in the hospital
worry that if they don't participate, then they won't
receive their full allotment of services? If so, is there
any chance at all that this really isn't "informed
consent", but rather "encouraged compliance"?
6. Need for independent advocates?
I am wondering if ethical research in the disability field,
may be assisted in certain situations by the presence of
an independent third party advocate to be involved in the
process as a "watchdog" so that no harm comes to the
disabled people involved. This person would need to be a
disability rights activist, trained in self-advocacy and
used to speaking up against bureaucracies, etc. The
function of this advocate would be to give independent
advice to the individual, and to reinforce the notion that
they do not have to consent. So much of the medical model,
and of service delivery, encourages "compliant" (sic)
behaviour, that an independent advocate, clearly on the
side of the individual, who reinforces notions of choice
and the right of refusal, may be necessary in some
circumstances.
These are just initial thoughts. I don't mean to sound
overly negative, it's important that research does occur in
the disability field, but it is equally important that
research is ethical and not exploitative.
Cheers
Mark Sherry
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