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This is because of the way humans make
decisions. “We’re not cognitive machines
that assess information,” he says. “We keep
trying to find ways of giving participants
more information, and helping them
understand it, when that’s not at all what
they’re doing when they make decisions.”
So what are they doing? Campus Review
spoke with Burgess a few hours before his
speech, Too Much to Think About: Making
Room for Trust and Practical Judgment in
Research Participation, to get the ethical
lowdown. and they don’t agree [to do the research],
then you can’t do the research ethically.
Research ethics committees, when
they review research, spend an awful lot
of time on the consent form, because
it’s documentation in plain language of
the nature of the research, the risks, the
probabilities and the benefits. They work
hard on making sure it communicates well.
My suggestion is that a lot of energy is
spent on something that has very poor
effectiveness. It doesn’t help us build
people’s ability to make good decisions
about participation very well because it
misunderstands several key features. One
is that it’s not the way people actually make
decisions. We’re not cognitive machines
that assess information. People listen
through a filter that doesn’t hang onto
information that doesn’t concern them.
Secondly, when we think about the
models of ethics we’re using these days, we
focus a lot more on relationships, and how
we build them. People make decisions,
whether healthcare or research-related, in
the context of their activities, in relation to
their family, the inconvenience to them, the
effects it would have on their friends and
the other activities they do, and the kind of
identity they have – how being involved in
research reflects on them as a person.
The third component is that there’s an
element of trust. In research, people tend
to come in with a predisposition towards
trusting. However, there is an exception
to trust. Sometimes people come in
to institutions, say, from an indigenous
background, where they don’t trust them.
They might be looking to say, “Why should
I participate?”
We make decisions out of relationships,
and we make efficient decisions with
limited information. The emphasis on giving
people all the relevant details [in consent
forms] doesn’t really support this, so I make
some suggestions about what we might
do differently.
CR: To begin with, could you briefly
summarise your topic? Could you give an example of how this could
occur in real life?
MB: I was asked to address something in
research ethics, and what I’ve been working
on for a long time are the limitations of
the way we think about informed consent.
Informed consent is when we get informed
voluntary agreement to participate in
research. It’s become sort of a linchpin of
research ethics: if you can’t get people to
understand [what they’re consenting to], A colleague of mine studied children’s
decisions to participate in cystic fibrosis
research. They asked 19 children, aged
8–19 years, what it was that made them
want to participate, and how they made
that decision. The children said it was
their parent’s attitudes towards research,
their own experiences of growing up and
participating in research (because they’ve
The ethics of consent
Informed consent not as effective
as you think, ethics professor says.
Mike Burgess interviewed by Loren Smith
“P
ut down the paperwork.” It’s an
unlikely message from an ethics
professor, but Mike Burgess, chair
in biomedical ethics at the University of
British Columbia, Canada, says that what’s
good on paper isn’t always in practice.
In Perth to deliver Curtin University’s
Annual Ethics Lecture, Burgess explained
how, in his view, research participants’
informed consent is inadequate.
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