Navigation Links
Most support Alzheimer's research based on family consent
Date:1/14/2009

ANN ARBOR, Mich. By 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. The study appears in the new issue of the journal Neurology.

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; investigator in the U-M Center for Behavioral and Decision Sciences in Medicine; and core member of the U-M Bioethics Program.

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 statesVirginia, New Jersey and Californiahave 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 consentboth 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.

The participants answered questions regarding one of four randomly assigned surrogate-based research scenarios: lumbar puncture study, a drug randomized control study, a vaccine study and a gene transfer study. Each participant answered three questions: whether our society should allow family surrogate consent, whether the individual would want to participate in the research, and whether the individual would allow a surrogate some or complete leeway to override stated personal preferences.

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.

Authors: In addition to Kim, co-authors from U-M were Hyungjin Myra Kim, Sc.D.U-M Center for Statistical Consultation and Research; and Kenneth M. Langa, M.D., Ph.D., Division of General Medicine at the U-M Health System, U-M Institute for Social Research, and Veterans Affairs Center for Practice Management and Outcomes Research. Paul S. Appelbaum, M.D., from Columbia University was the senior author; Jason H. T. Karlawish, M.D., from the University of Pennsylvania, and David S. Knopman, M.D., from the Mayo Clinic, also were co-authors.

Funding: Kim was supported by a grant from the National Institute on Aging and a Greenwall Foundation Faculty Scholars in Bioethics award. Langa was supported by a grant from the NIA and a Paul Beeson Physician Faculty Scholars in Aging Research award. Karlawish was supported by a Greenwall Foundation Faculty Scholars in Bioethics award and the Marian S. Ware Alzheimer Program. NIA also provided funding for the Health and Retirement Study, which is performed at the Survey Research Center, Institute for Social Research, University of Michigan.


'/>"/>

Contact: Katie Vloet or Margarita Bauza
kgazella@umich.edu
734-764-2220
University of Michigan Health System
Source:Eurekalert

Related medicine news :

1. Unbound Medicine Announces Download Support for iPhone(TM) and iPod(R) Touch Devices
2. After Founding Meeting in St. Louis ... Labor Unions Vow Stepped Up Pressure on Congress to Support Medicare for All Approach to Healthcare Reform
3. Window World Cares Raises $160,000 for St. Jude Childrens Hospital, Commits to Ongoing Support
4. AGnES supports general practitioners
5. UNC study supports role of circadian clock in response to chemotherapy
6. Alliance for Pediatric Quality Supports New ANSI-Approved Standard for Child Health Passed by HL7
7. Summa Health Network Announces Contract with MDdatacor to Support Multi-Insurer Health Care Quality Initiative; Initiative to Use Clinical Data to Supplement Claims Data and Enhance Outcomes
8. OnCore System Supporting Research Informatics Needs of the University of Wisconsin's Institute for Clinical and Translational Research
9. Last Minute Gift Idea That Supports Communities in Need Around the World
10. Cargill Receives Official Notification From FDA Supporting the Safety of Truvia(TM) Rebiana
11. $5.15 Million Provided to Support Local Health Care Needs
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:6/24/2016)... ... , ... Global law firm Greenberg Traurig, P.A. announced that 20 Florida attorneys ... peers for this recognition are considered among the top 2 percent of lawyers practicing ... members of this year’s Legal Elite Hall of Fame: Miami Shareholders Mark D. ...
(Date:6/24/2016)... (PRWEB) , ... June 24, 2016 , ... Comfort Keepers® ... American Cancer Society and the Road To Recovery® program to drive cancer patients to ... and other adults to ensure the highest quality of life and ongoing independence. ...
(Date:6/24/2016)... ... June 24, 2016 , ... People across the U.S. are sharpening their pencils ... an essay contest in which patients and their families pay tribute to a genetic ... 2016 National Society of Genetic Counselors (NSGC) Annual Education Conference (AEC) this September. ...
(Date:6/24/2016)... ... June 24, 2016 , ... The Haute Beauty ... Barry M. Weintraub as a prominent plastic surgeon and the network’s newest partner. ... and the most handsome men, look naturally attractive. Plastic surgery should be invisible.” ...
(Date:6/24/2016)... ... June 24, 2016 , ... Strategic Capital Partners, LLC ... by obtaining investment capital for emerging technology companies. SCP has delivered investment ... resulted in more than a million dollars of capital investment for five companies. ...
Breaking Medicine News(10 mins):
(Date:6/24/2016)... Belgium , June 24, 2016 ... the appointment of Dr. Edward Futcher ... Non-Executive Director, effective June 23, 2016.Dr. Futcher was ... Nominations and Governance Committees.  As a non-executive member ... independent expertise and strategic counsel to VolitionRx in ...
(Date:6/23/2016)... Research and Markets has announced the ... to 2022" report to their offering. ... patients with kidney failure, it replaces the function of kidneys ... blood and thus the treatment helps to keep the patient ... Increasing number of ESRD patients & substantial ...
(Date:6/23/2016)... startling report released today, National Safety Council research shows ... plan to eliminate prescription opioid overdoses. Prescription Nation ... the worst drug crisis in recorded U.S. history, assigned a "Making ... , New Mexico , Tennessee ... states, three – Michigan , Missouri ...
Breaking Medicine Technology: