Forum for Science, Industry and Business

Sponsored by:     3M 
Search our Site:

 

Is it okay to sign Alzheimer’s patients up for research studies?

08.11.2005


Grandma has Alzheimer’s disease – should you sign her up for a new research study, even if she doesn’t really understand what it entails? What if the research has real risks, is unlikely to benefit her, but could lead to advances that will help future patients with Alzheimer’s? A new study sheds light on these questions, which may come up more often as potential treatments require more involved and invasive research.



"As potential new therapies such as vaccines, gene therapy, and new drugs are being tested, the need for research must be balanced with the need to protect vulnerable adults," said Scott Y. H. Kim, MD, PhD, of the University of Michigan Medical School in Ann Arbor. "This continues to be an area with unsettled policy, and there is little data to guide policymakers. It doesn’t seem ideal to leave these important ethical questions solely to politics. This study shows that it’s possible to learn the views of key stakeholder groups, and they can provide important insights."

People at heightened risk for Alzheimer’s disease – 229 people who were over 70 and had at least one close relative with the disease – took part in the study, which is published in the November 8, 2005, issue of Neurology, the scientific journal of the American Academy of Neurology.


The participants were given 10 research scenarios and asked if the research portrayed was acceptable when it involves people with Alzheimer’s who cannot give their own informed consent and are enrolled with a family member’s permission.

They were asked to consider three perspectives: whether the research was acceptable from a societal perspective, from their own perspective (whether the participants would want a loved one to make the decision for them), and from the perspective of a surrogate (how they would make a decision for a loved one).

The 10 scenarios ranged from low-risk studies involving observation or routine blood draws to higher-risk studies like testing a potential vaccine or a neurosurgical gene-transfer intervention. The survey participants were told about the risks and any potential benefits to subjects or to society.

More than 90 percent of the participants felt that minimal risk studies as well as randomized clinical trials of new medicines should be allowed with incompetent Alzheimer’s subjects if family members give permission. A smaller proportion, but still a majority, felt that even the scenarios with the most risk (for example, early phase experiments testing gene-transfer) were acceptable.

In general, participants endorsed family consent for research most strongly when applied to themselves as future research subjects and least strongly when placing themselves in the position of the surrogate having to decide for a loved one. For example, for a study that would involve a lumbar puncture (also known as a spinal tap), family consent for research was endorsed by 69 percent when applied to themselves as future subjects, by 65 percent from a social policy perspective, and by 61 percent as something they would allow for a loved one.

Participants were more likely to find the research scenarios acceptable if they had a generally supportive attitude toward biomedical research. The study participants were already taking part in an Alzheimer’s disease anti-inflammatory prevention research study. The researchers note that the participants could be more supportive of research than the typical person at risk for Alzheimer’s.

"However, those taking part in the study were fairly typical demographically to people taking part in other studies of Alzheimer’s disease, so they may be quite similar to those likely to be considered for future research studies," Kim said.

Marilee Tuite | EurekAlert!
Further information:
http://www.aan.com

More articles from Studies and Analyses:

nachricht New study: How does Europe become a leading player for software and IT services?
03.04.2017 | Fraunhofer-Institut für System- und Innovationsforschung (ISI)

nachricht Reusable carbon nanotubes could be the water filter of the future, says RIT study
30.03.2017 | Rochester Institute of Technology

All articles from Studies and Analyses >>>

The most recent press releases about innovation >>>

Die letzten 5 Focus-News des innovations-reports im Überblick:

Im Focus: Wafer-thin Magnetic Materials Developed for Future Quantum Technologies

Two-dimensional magnetic structures are regarded as a promising material for new types of data storage, since the magnetic properties of individual molecular building blocks can be investigated and modified. For the first time, researchers have now produced a wafer-thin ferrimagnet, in which molecules with different magnetic centers arrange themselves on a gold surface to form a checkerboard pattern. Scientists at the Swiss Nanoscience Institute at the University of Basel and the Paul Scherrer Institute published their findings in the journal Nature Communications.

Ferrimagnets are composed of two centers which are magnetized at different strengths and point in opposing directions. Two-dimensional, quasi-flat ferrimagnets...

Im Focus: World's thinnest hologram paves path to new 3-D world

Nano-hologram paves way for integration of 3-D holography into everyday electronics

An Australian-Chinese research team has created the world's thinnest hologram, paving the way towards the integration of 3D holography into everyday...

Im Focus: Using graphene to create quantum bits

In the race to produce a quantum computer, a number of projects are seeking a way to create quantum bits -- or qubits -- that are stable, meaning they are not much affected by changes in their environment. This normally needs highly nonlinear non-dissipative elements capable of functioning at very low temperatures.

In pursuit of this goal, researchers at EPFL's Laboratory of Photonics and Quantum Measurements LPQM (STI/SB), have investigated a nonlinear graphene-based...

Im Focus: Bacteria harness the lotus effect to protect themselves

Biofilms: Researchers find the causes of water-repelling properties

Dental plaque and the viscous brown slime in drainpipes are two familiar examples of bacterial biofilms. Removing such bacterial depositions from surfaces is...

Im Focus: Hydrogen Bonds Directly Detected for the First Time

For the first time, scientists have succeeded in studying the strength of hydrogen bonds in a single molecule using an atomic force microscope. Researchers from the University of Basel’s Swiss Nanoscience Institute network have reported the results in the journal Science Advances.

Hydrogen is the most common element in the universe and is an integral part of almost all organic compounds. Molecules and sections of macromolecules are...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Dortmund MST Conference presents Individualized Healthcare Solutions with micro and nanotechnology

22.05.2017 | Event News

Innovation 4.0: Shaping a humane fourth industrial revolution

17.05.2017 | Event News

Media accreditation opens for historic year at European Health Forum Gastein

16.05.2017 | Event News

 
Latest News

New approach to revolutionize the production of molecular hydrogen

22.05.2017 | Materials Sciences

Scientists enlist engineered protein to battle the MERS virus

22.05.2017 | Life Sciences

Experts explain origins of topographic relief on Earth, Mars and Titan

22.05.2017 | Physics and Astronomy

VideoLinks
B2B-VideoLinks
More VideoLinks >>>