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Family Consent for Alzheimer’s Research

Family Consent for Alzheimer’s ResearchBy the time they have been diagnosed with Alzheimer’s disease, many patients’ decision-making ability is so impaired that they cannot give informed consent to participate in research studies.

Close family members are left with the decision, but there is no clear policy for this so-called “surrogate” consent. Because of that, research about the increasingly common disease is often stalled.

But a new study led by the University of Michigan Health System suggests that older Americans are very supportive of family surrogate-based research, and would support having their family members enroll them in research in case of future incapacity.

Because of uncertainties about federal policy, some institutions have gone so far as to not allow surrogate consent at all and research has been halted at other institutions, says lead author Scott Y. H. Kim, M.D., Ph.D., associate professor in the U-M Medical School’s Department of Psychiatry.

The federal policy states that surrogate consent can be provided by legally authorized representatives of adult patients, but the federal government defers to states to define who these representatives are. The lack of a clear definition has caused widespread confusion and uncertainty for three decades, notes Kim.

If state policies are unclear, then it is the responsibility of hospitals and their Institutional Review Boards to determine the boundaries for surrogate-based research. Only three states—Virginia, New Jersey and California—have recently enacted research ethics laws that clearly address this issue.

Even though regulations remain unclear, however, the general public appears to accept the idea of family surrogate consent—both as a societal policy and for themselves, the new study found.

“We wring our hands about this issue in ethics circles,” Kim says, “but people seem to understand that we need to do this kind of research to find ways of treating Alzheimer’s.” Kim also notes that the U.S. Department of Health and Human Services has formed an advisory committee that is looking at this issue.

Methodology: Survey data was based on the U-M Health and Retirement Study, a biennial survey of a nationally representative sample of Americans ages 51 and older funded by the National Institute on Aging.

Findings: Most respondents in the survey stated that our society should allow family surrogate consent (68 percent to 83 percent, depending on the scenario) and would themselves want to participate in surrogate-based research (57 percent to 80 percent). Most also would grant some or complete leeway to their surrogates (55 percent to 67 percent), though these numbers were higher among people who were also willing to participate.

Although ethnic and racial minority groups were slightly less willing to participate in surrogate-based research, there was overall broad support for surrogate-based research even in these groups.

Significance: Little research, and no national research, has been conducted about public opinion of surrogate-based research, Kim notes. The rates of Alzheimer’s disease are rising rapidly; in 2000, there were 4.5 million Americans with the incurable disease, and by 2050, this number is projected to be 12.5 million if no effective treatments are found.

The study appears in the new issue of the journal Neurology.

Source: University of Michigan Health System

Family Consent for Alzheimer’s Research

Rick Nauert PhD

Rick Nauert, PhDDr. Rick Nauert has over 25 years experience in clinical, administrative and academic healthcare. He is currently an associate professor for Rocky Mountain University of Health Professionals doctoral program in health promotion and wellness. Dr. Nauert began his career as a clinical physical therapist and served as a regional manager for a publicly traded multidisciplinary rehabilitation agency for 12 years. He has masters degrees in health-fitness management and healthcare administration and a doctoral degree from The University of Texas at Austin focused on health care informatics, health administration, health education and health policy. His research efforts included the area of telehealth with a specialty in disease management.

APA Reference
Nauert PhD, R. (2015). Family Consent for Alzheimer’s Research. Psych Central. Retrieved on August 16, 2018, from https://psychcentral.com/news/2009/01/15/family-consent-for-alzheimers-research/3645.html

 

Scientifically Reviewed
Last updated: 6 Oct 2015
Last reviewed: By John M. Grohol, Psy.D. on 6 Oct 2015
Published on PsychCentral.com. All rights reserved.