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: Making lightweight construction suitable for series production

More and more automobile companies are focusing on body parts made of carbon fiber reinforced plastics (CFRP). However, manufacturing and repair costs must be further reduced in order to make CFRP more economical in use. Together with the Volkswagen AG and five other partners in the project HolQueSt 3D, the Laser Zentrum Hannover e.V. (LZH) has developed laser processes for the automatic trimming, drilling and repair of three-dimensional components.

Automated manufacturing processes are the basis for ultimately establishing the series production of CFRP components. In the project HolQueSt 3D, the LZH has...

Im Focus: Wonder material? Novel nanotube structure strengthens thin films for flexible electronics

Reflecting the structure of composites found in nature and the ancient world, researchers at the University of Illinois at Urbana-Champaign have synthesized thin carbon nanotube (CNT) textiles that exhibit both high electrical conductivity and a level of toughness that is about fifty times higher than copper films, currently used in electronics.

"The structural robustness of thin metal films has significant importance for the reliable operation of smart skin and flexible electronics including...

Im Focus: Deep inside Galaxy M87

The nearby, giant radio galaxy M87 hosts a supermassive black hole (BH) and is well-known for its bright jet dominating the spectrum over ten orders of magnitude in frequency. Due to its proximity, jet prominence, and the large black hole mass, M87 is the best laboratory for investigating the formation, acceleration, and collimation of relativistic jets. A research team led by Silke Britzen from the Max Planck Institute for Radio Astronomy in Bonn, Germany, has found strong indication for turbulent processes connecting the accretion disk and the jet of that galaxy providing insights into the longstanding problem of the origin of astrophysical jets.

Supermassive black holes form some of the most enigmatic phenomena in astrophysics. Their enormous energy output is supposed to be generated by the...

Im Focus: A Quantum Low Pass for Photons

Physicists in Garching observe novel quantum effect that limits the number of emitted photons.

The probability to find a certain number of photons inside a laser pulse usually corresponds to a classical distribution of independent events, the so-called...

Im Focus: Microprocessors based on a layer of just three atoms

Microprocessors based on atomically thin materials hold the promise of the evolution of traditional processors as well as new applications in the field of flexible electronics. Now, a TU Wien research team led by Thomas Müller has made a breakthrough in this field as part of an ongoing research project.

Two-dimensional materials, or 2D materials for short, are extremely versatile, although – or often more precisely because – they are made up of just one or a...

All Focus news of the innovation-report >>>

Anzeige

Anzeige

Event News

Expert meeting “Health Business Connect” will connect international medical technology companies

20.04.2017 | Event News

Wenn der Computer das Gehirn austrickst

18.04.2017 | Event News

7th International Conference on Crystalline Silicon Photovoltaics in Freiburg on April 3-5, 2017

03.04.2017 | Event News

 
Latest News

NASA's Fermi catches gamma-ray flashes from tropical storms

25.04.2017 | Physics and Astronomy

Researchers invent process to make sustainable rubber, plastics

25.04.2017 | Materials Sciences

Transfecting cells gently – the LZH presents a GNOME prototype at the Labvolution 2017

25.04.2017 | Life Sciences

VideoLinks
B2B-VideoLinks
More VideoLinks >>>