The ethics of informed consent in Alzheimer disease research

Kim, Scott Y. H.

doi:10.1038/nrneurol.2011.76

Cited by 57 publications

(49 citation statements)

References 36 publications

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“…Such use of surrogate decision-makers should represent extremely rare cases. It requires special vigilance as surrogates may, on purpose or unknowingly, pursue their own interests at the expense of the patient 16. Local legislation may govern such clinical situations in different countries 17 18.…”

Section: Methodsmentioning

confidence: 99%

Consensus on guidelines for stereotactic neurosurgery for psychiatric disorders

Nuttin

Mayberg

et al. 2014

Journal of Neurology, Neurosurgery & Psychiatry

164

133

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BackgroundFor patients with psychiatric illnesses remaining refractory to ‘standard’ therapies, neurosurgical procedures may be considered. Guidelines for safe and ethical conduct of such procedures have previously and independently been proposed by various local and regional expert groups.MethodsTo expand on these earlier documents, representative members of continental and international psychiatric and neurosurgical societies, joined efforts to further elaborate and adopt a pragmatic worldwide set of guidelines. These are intended to address a broad range of neuropsychiatric disorders, brain targets and neurosurgical techniques, taking into account cultural and social heterogeneities of healthcare environments.FindingsThe proposed consensus document highlights that, while stereotactic ablative procedures such as cingulotomy and capsulotomy for depression and obsessive-compulsive disorder are considered ‘established’ in some countries, they still lack level I evidence. Further, it is noted that deep brain stimulation in any brain target hitherto tried, and for any psychiatric or behavioural disorder, still remains at an investigational stage. Researchers are encouraged to design randomised controlled trials, based on scientific and data-driven rationales for disease and brain target selection. Experienced multidisciplinary teams are a mandatory requirement for the safe and ethical conduct of any psychiatric neurosurgery, ensuring documented refractoriness of patients, proper consent procedures that respect patient's capacity and autonomy, multifaceted preoperative as well as postoperative long-term follow-up evaluation, and reporting of effects and side effects for all patients.InterpretationThis consensus document on ethical and scientific conduct of psychiatric surgery worldwide is designed to enhance patient safety.

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Section: Methodsmentioning

confidence: 99%

Consensus on guidelines for stereotactic neurosurgery for psychiatric disorders

Nuttin

Mayberg

et al. 2014

Journal of Neurology, Neurosurgery & Psychiatry

164

133

View full text Add to dashboard Cite

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“…This is similar to the framework developed by Grisso and Appelbaum,12 which is widely used in the US and other jurisdictions. Studies using the functional capacity framework show that most patients with Alzheimer’s disease are incapable of making treatment and research decisions,13 including simple decisions regarding medication for Alzheimer’s disease 14. Even mild cognitive impairment (a condition that precedes Alzheimer’s disease by 3–4 years15) can cause significant impairment in decision making,16 with 40% of patients lacking capacity for research decisions 17.…”

Section: Discussionmentioning

confidence: 99%

Advance euthanasia directives: a controversial case and its ethical implications

2018

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Authorising euthanasia and assisted suicide with advance euthanasia directives (AEDs) is permitted, yet debated, in the Netherlands. We focus on a recent controversial case in which a Dutch woman with Alzheimer's disease was euthanised based on her AED. A Dutch euthanasia review committee found that the physician performing the euthanasia failed to follow due care requirements for euthanasia and assisted suicide. This case is notable because it is the first case to trigger a criminal investigation since the 2002 Dutch euthanasia law was enacted. Thus far, only brief descriptions of the case have been reported in English language journals and media. We provide a detailed description of the case, review the main challenges of preparing and applying AEDs for persons with dementia and briefly assess the adequacy of the current oversight system governing AEDs.

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“…This might be due to regulations of data protection and legal requirements concerning confidential medical communication, which may be complicated with demented residents, who often have legal representatives 33 .…”

Section: Discussionmentioning

confidence: 99%

Prevalence of dementia in a rural nursing home population in Southern Germany

et al. 2013

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GERMANYABSTRACT -Background and Objectives: We sought to obtain data about the prevalence of dementia in rural nursing homes in Germany.Methods: We conducted our data between 2007 and 2009 in the diocese of Passau, Germany. By using a questionnaire we asked all nursing homes in the area to provide information about patients with dementia. We obtained detailed data from three nursing homes by personal visits, telephone calls and mail.Results: Out of 72 nursing homes, 40 provided the requested data. The 40 facilities included in our study house a total of 3,928 residents, 1,892 of whom are diagnosed with dementia (48%). Three nursing homes provided us with more detailed information.Conclusions: We conclude that the prevalence of dementia in nursing homes in Germany is comparable to those rates reported in other countries. As there is a lack of information globally on rural populations affected by dementia, further international research in this area will give important insights into the risk factors, the variables influencing the course of the disease, and the special care needs of this population.

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The ethics of informed consent in Alzheimer disease research

Cited by 57 publications

References 36 publications

Consensus on guidelines for stereotactic neurosurgery for psychiatric disorders

Consensus on guidelines for stereotactic neurosurgery for psychiatric disorders

Advance euthanasia directives: a controversial case and its ethical implications

Prevalence of dementia in a rural nursing home population in Southern Germany

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