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New ethical guidelines needed for dementia research
Date:3/29/2010

How do we handle the ethical dilemmas of research on adults who can't give their informed consent? In a recent article in the journal Bioethics, ethicist Stefan Eriksson proposes a new approach to the dilemma of including dementia patients and others with limited decision making capabilities in research.

There is a need for research on persons with impaired decision making, for example dementia patients. Without their participation we stand to loose knowledge necessary for future treatments that can benefit these groups. There are ethical guidelines to guard their interests, but they are somewhat ill-guided, says Stefan Eriksson, associate professor of research ethics at the Centre for Research Ethics & Bioethics (CRB).

"We are sometimes led to believe that these guidelines conclusively state that research on these groups is permitted only in exceptional cases, but they don't," he says.

According to Stefan Eriksson, today's guidelines are often arbitrary. On one hand, research that benefits some groups, for example one's own age group, is allowed. On the other hand, research that benefits other groups, for example one's own children or community is not allowed. The previous will or interests expressed by person has little or no weight in these situations.

Another problem that Stefan Eriksson highlights is that some ethical standards simply make no sense for these groups. For example, the idea of a 'minimal risk standard' builds on the idea that there is something ordinary or routine about the risks we take in our daily lives. Such risks should then be acceptable in research as well. This kind of reasoning doesn't work for someone with for example Alzheimer's. The same is true for 'very slight impact' and 'routine examination', notions that doesn't translate well to a person with dementia who might very well react in a very different way than a person without dementia.

"The guidelines that researchers act
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Contact: Stefan Eriksson
stefan.eriksson@crb.uu.se
46-184-716-198
Uppsala University
Source:Eurekalert

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