Neurology -- Correspondence for Kim et al., 65 (9) 1395-1401

Correspondence published:

What do people at risk for Alzheimer disease think about surrogate consent for research?: Dale B. Schenk, Sid Gilman (7 March 2006)

What do people at risk for Alzheimer disease think about surrogate consent for research? 7 March 2006

Dale B. Schenk,
Elan Pharmaceuticals
800 Gateway Blvd. South San Francisco, CA 94080,
Sid Gilman
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Re: What do people at risk for Alzheimer disease think about surrogate consent for research?

dale.schenk{at}elan.com Dale B. Schenk, et al.

Patients with Alzheimer's disease face a cruel paradox when it comes to clinical trials: the moment that people are the most anxious to enroll in treatment protocols, they may least be able to decide for themselves whether participation is appropriate. The resulting inability to recruit volunteers for vitally needed research can slow or even stifle the development of new molecules to combat Alzheimer's disease at a moment when scientists are becoming increasingly optimistic about creating effective disease modifying treatments.
So what if a person no longer has full capacity to decide? Can someone else make the right medical decision for another?
Those and other questions are raised in a provocative study in the article by Kim et al. [1] The authors surveyed a cohort of those at heightened risk for Alzheimer's disease by presenting them with ten research scenarios ranging from low-risk studies to more experimental trials including vaccines or gene transfer.
When confronted with the question of whether a family member should be allowed to enroll an Alzheimer's patient in a study, 90 percent of respondents said that it was acceptable if the risk were minimal. However, even with a riskier treatment, most of those queried felt that they would trust a family member.
We believe the results of the study are encouraging for both scientific and ethical reasons. First, it shows that the people who are more likely to be patients have confidence that Alzheimer's disease research will find answers, even if they can't choose to participate in trials of new agents themselves. Secondly, the survey reveals that there is faith in loved ones to act with caution and conscience for those who no longer have a voice in their medical destiny.
Providers must take great care as well to determine a person's wishes and concerns in advance of committing an individual to any medical risk.
Finally, it's interesting that the survey respondents were most enthusiastic about offering themselves as research subjects with family consent. The clear message is that patients who understand the risks are willing to commit themselves to potentially life saving research, and they want those who mean the most to them to carry those wishes out as a gesture of love and understanding and perhaps with the hope of changing their own destiny in the process.
Disclosure: Dale Schenk is employed and holds stock in Elan Pharmaceuticals, a company that is identifying potential therapeutic candidates for Alzheimer's disease.
Dr. Sid Gilman reports no conflict of interest.