Placebo

The Engine of Reason, The Seat of the Soul: A Philosophical Journey into the Brain

This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members.

Ethical aspects of researching subjective experiences in early-stage dementia

Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making.

/pdf/promoting-advance-planning-for-health-care-and-research-865ggu7c97.pdf

Promoting advance planning for health care and research among older adults: A randomized controlled trial

Dementia raises many ethical issues. The present review, taking note of the fact that the stages of dementia raise distinct ethical issues, focuses on three issues associated with stages of dementia's progression: (1) how the emergence of preclinical and asymptomatic but at-risk categories for dementia creates complex questions about preventive measures, risk disclosure, and protection from stigma and discrimination; (2) how despite efforts at dementia prevention, important research continues to investigate ways to alleviate clinical dementia's symptoms, and requires additional human subjects protections to ethically enroll persons with dementia; and (3) how in spite of research and prevention efforts, persons continue to need to live with dementia. This review highlights two major themes. First is how expanding the boundaries of dementias such as Alzheimer's to include asymptomatic but at-risk persons generate new ethical questions. One promising way to address these questions is to take an integrated approach to dementia ethics, which can include incorporating ethics-related data collection into the design of a dementia research study itself. Second is the interdisciplinary nature of ethical questions related to dementia, from health policy questions about insurance coverage for long-term care to political questions about voting, driving, and other civic rights and privileges to economic questions about balancing an employer's right to a safe and productive workforce with an employee's rights to avoid discrimination on the basis of their dementia risk. The review highlights these themes and emerging ethical issues in dementia.

https://www.cambridge.org/core/services/aop-cambridge-core/content/view/S1041610215000848

A review of ethical issues in dementia.

A changing landscape for advance directives in dementia research.

In dementia research evidence is mounting that therapeutic strategies that target moderate and even mild Alzheimer9s disease may be missing the ‘therapeutic window’. Given that the neuropathology that leads to Alzheimer9s disease probably begins somewhere between 10 and 15 years before symptoms manifest, many believe that the optimal therapeutic strategy would target persons in the earliest phases of disease development or even earlier. This would include, for example, persons with prodromal Alzheimer9s and even persons who are deemed at risk. Given the nature of research involving the central nervous system, it is conceivable that some therapeutic investigations may involve an increase over minimal risk. This paper examines how, in dementia research, at-risk persons, although healthy, bring multiple and intersecting vulnerabilities to the prospect of research participation even though they are clinically healthy. Current guidelines for research ethics may not provide adequately for the nuances of ‘healthy individuals’ and their possible vulnerabilities. In the context of neurodegenerative disease, the fact of being ‘at risk’ alters the vulnerability profile in significant ways. While healthy persons who are at risk of developing dementia may not appear to warrant placement in the research category of vulnerable participants (alongside prisoners, pregnant women and children) careful regard for the vulnerabilities that arise as a result of the intersecting circumstances of being healthy and at risk of an incurable disease are worthy of increased attention and consideration, particularly as the research effort for the increasingly prevalent disease of Alzheimer9s moves forward.

https://jme.bmj.com/content/medethics/36/9/553.full.pdf?36%2F9%2F553=

Complex calculations: ethical issues in involving at-risk healthy individuals in dementia research

Many legal scholars well recognize that, in some instances, support for a law or policy may be primarily because of its expressive function, i.e. the statements it makes about underlying values. In these cases, the expressive content of a law or policy may actually overshadow its central purpose. Examples of this phenomenon, according to Cass Sunstein, include, for example, regulations against hate speech in the USA. He suggests that achieving the consequence (prohibiting hateful speech against certain groups) may not be the real focus (central purpose) of the law. Rather, the real focus is on the social meaning of these regulations—that bigotry is unacceptable in a liberal society. In this way, a particular law or policy can operate on many levels—while aiming to achieve a particular objective or behavior, it can also be a valuable tool for achieving other important social goals through its expressive function. This article applies this insight to the realm of public health policy, with particular attention to the case of pandemic planning, and suggests that public health policy and its overall goals may be well-served by deliberate regard for, and appropriate utilization of, the expressive function.

The Expressive Function of Public Health Policy: The Case of Pandemic Planning

The recent proposal by Douglas and Savulescu for an ethics of knowledge provokes a renewed consideration of an enduring issue. Yet, the concept raises significant challenges for procedural and substantive justice. Indeed, the operationalisation of ‘an ethics of knowledge’ could be as alarming as what it seeks to prevent. While we can acknowledge that there is, and surely always will be, potential for misuse of beneficial science and technology, a contemplated conception of what we ought to not know, devise or disseminate sets before us an enormously complex task. This essay challenges an ethics of knowledge to respond to concerns of procedural and substantive justice. While the concept has a certain appeal, it does not appear to adequately address certain fundamental issues as it is currently presented. Here, the author invites consideration of two primary points: (1) who should decide, based on whose interests? and (2) could such an exercise actually be effective in achieving its goal?

https://jme.bmj.com/content/medethics/38/10/636.full.pdf?38%2F10%2F636=

Whose ethics of knowledge? Taking the next step in evaluating knowledge in synthetic biology: a response to Douglas and Savulescu

Deception in human subject research is neither uncommon nor prohibited. The use of deception in the recruitment phase of clinical research has received relatively little attention. Given that informed consent is foundational to human subject research, the practice of misrepresenting the study purpose in clinical research would seem to contradict one of the fundamental tenets of ethical human subjects research. Using the example of prodromal psychosis, this article the ethical and legal implications of deception in recruitment and the sufficiency of current guidance on the practice when the study involves a stigmatizing condition, the collection of genetic samples, or both. I conclude that when these two elements are present, deception should only be used when absolutely necessary and, if used, researchers should be required to debrief participants before the collection of genetic samples and give particular attention to minimizing risks of privacy breaches.

Robin Pierce

Papers

A changing landscape for advance directives in dementia research.

Complex calculations: ethical issues in involving at-risk healthy individuals in dementia research

The Expressive Function of Public Health Policy: The Case of Pandemic Planning

Whose ethics of knowledge? Taking the next step in evaluating knowledge in synthetic biology: a response to Douglas and Savulescu

What a tangled web we weave: ethical and legal implications of deception in recruitment.