Sarah Dulaney and Jennifer Merrilees led another seminar on ethical concerns in the care and management of people with Capgras syndrome which is common in, though not exclusive to, patients with Lewy Body Dementia. It can lead people to believe that those close to them have been replaced by imposters, or render them unable to recognize themselves, or their surroundings, pets, plants, etc. Drawing from conclusions in Meeri Kim’s article (The Washington Post, 2018) and Thaipisutikul et al.’s paper (International Psychogeriatrics, 2013), ethical concerns present in cases of Capgras reflect the effects of caregiver burden and the high rates of visual hallucinations and symptoms of anxiety in patients, which can lead to experiences of guilt or conflicts in value systems for behaving in certain ways as a result of being unable to remember loved ones.
As Capgras is associated with regions of the brain involved in visual processing and emotional response, we discussed potential coping mechanisms like triggering remembering through non-visual sensations, using phone calls to trigger voice recognition, or having a friend or family member call the patient to help reduce any anxiety associated with not being able to visually recognize others. We also spent some time analyzing three case studies of patients with Capgras where we identified considerations of care based on the bioethical principles of autonomy, beneficence, and non-maleficence. These included maintaining the patients’ best interests in relation to patient and caregiver safety and convenience, navigating between quantity versus quality of life when considering treatment options, and acknowledging the potential financial burden of adequate care.
During today’s seminar, Cailin Lechner presented on a collaborative project investigating consent in human intracranial electrophysiology studies. Regulations and policies attempt to provide recommendations on how to consent, yet often lack guidelines on which members of the study team could best obtain consent. This can be further complicated in studies involving human intracranial electrophysiology research as these require patients, undergoing neurosurgery for serious neurological disease, to consent to technically complex interventions for primarily investigative, non-therapeutic purposes. Providing appropriate context for such decisions may require a team member with a high degree of expertise, typically a clinician involved in the study, to obtain consent. Papers by Morain et al. and Da Silva et al. entertain potential pitfalls of such “dual-role” consent, including therapeutic misconception, conflicts of interest, or compromised voluntariness.
Cailin’s project involved interviewing 26 investigators from various human intracranial electrophysiology studies using semi-structured
interviews. Most studies included employed a hybrid approach,
where more than one team member was involved in the consenting of potential participants. For example, a surgeon or principal
investigator might be responsible for detailing the complexity of the surgery, while a second team member, usually a research coordinator,
would obtain the patient’s signature. While studies varied regarding specifically which team member would obtain
consent, rationales reflected several themes, including the need to provide expert knowledge while also preserving voluntariness, logistical needs such as availability around the time of surgery, regulatory guidance, and ethical instinct (where particular team members were chosen based on what seemed like the right thing to do).
Our following discussion centered primarily on navigating between the values of expertise and knowledge versus voluntariness in the consent process. We wondered if a non-physician team member could provide enough expertise to ensure that the patient was knowledgeable about his or her involvement and maintain the quality of the discussion while still preserving the voluntariness of consent. We then considered if IRB guidelines could help provide better consent processes if boards were more aware of the details of the experiments and what degree of understanding would be required in order to have informed consent. Finally, the group also acknowledged the need for additional inquiries on whether or not patients believed if they were adequately informed or if they liked or would have preferred being consented by certain team members, although we also recognized the influence that research outcomes may have on these types of post-hoc responses.
During this week’s seminar, Sarah Dulaney and Jennifer Merrilees led a discussion on hypersexuality in Lewy Body Dementia. Throughout our conversation, we drew connections from Bronner and Korczyn’s article, “The Role of Sex Therapy in the Management of Patients with Parkinson’s Disease” (Movement Disorders Clinical Practice, 2018). We focused on ethical considerations related to patients and caregivers’ concerns about issues with intimacy as a result of dementia.
We began by introducing sexual issues that couples may have as a result of dementia, making note of the need to acknowledge and address the lack of sexual health discussions in healthcare settings with people who have these and other disabilities. Some ethical concerns that arose included sexual consent capacity in aging populations and the medicalization of sexuality. The group was also interested in the role that providers and sex therapists have in helping to mitigate sex-related issues in relationships, where significant others must often navigate between the spousal/partner and caregiver roles. Finally, we used a set of three case studies (hypersexuality as a result of Parkinson’s medications, hypersexuality due to Lewy Body Dementia, and hypersexuality in an assisted living facility) to discuss how to best address sex-related conflicts that may occur between patients with dementia and their caregivers.
During today’s seminar, we held an informal discussion on the impact that “neurohype” can have on neurotechnology research. We discussed the effects that media exposure can have on influencing public responses about the role of technology in society, how these attitudes might impact future research, and ways to foster public dialogue about the potential capabilities or harms of novel neurotechnology.
In order to generate greater traffic on neurotechnology media articles, scientific research papers may be used as a means to present broader issues about the role of technology in society. This risks asking “what if” questions that go beyond the realistic capabilities of research, and thus provides incorrect perceptions to readers about the progress of technology. The group discussed the consequences of producing hype in such a manner, expressing worry about how misinforming the public with such articles could impact future research into neurotechology. We also brainstormed more responsible ways of communicating scientific research with the public in order to produce interest in upcoming technology without simultaneously overstepping its bounds.
Today’s discussion centered around positive Alzheimer’s disease biomarker status disclosure and the preclinical caregiver, a concept described by Emily Largent in her recent opinion paper as the anticipatory caregiving role family members assume upon realization that their presently unimpaired loved one is at risk of developing clinical dementia symptoms. Jalayne Arias led our conversation, offering insights from her legal and bioethics background as well as her research investigating discrimination and biomarker status.
Largent posits that the passage of laws encouraging early care planning coupled with the transition toward a pathological, biomarker-centric conceptualization of AD will drive diagnosis prior to the onset of cognitive decline and increase early involvement from family members, who will likely experience emotional and psychological stress. Within our group, we clarified the current state of the science by emphasizing the limited predictive power of biomarkers, especially among asymptomatic populations. In light of the unclear connection between AD biomarkers and disease progression, we expressed concerns that diagnosis on the basis of biomarker positivity might stoke unnecessary fears, ignite family conflict, trigger investment in long-term care insurance that may never be of use, and reduce access to affordable life insurance coverage. With the knowledge that individuals often experience suicidal ideation after receiving a positive AD biomarker status, we considered the mental impact on preclinical caregivers, from feelings of isolation to anxiety regarding prognosis uncertainty. We also acknowledged the potential benefit of biomarker disclosure on early engagement in advanced care planning, a process that becomes particularly challenging if performed post-diagnosis, as patients often exhibit cognitive deficits that jeopardize their capacity to make decisions. Legally, we questioned whether individuals with AD biomarker positivity fall within the ADA’s definition of a person with a disability, and if they and their caregivers qualify for benefits, including employment leave and caregiver support.
July 8, 2019 - Research in participants with Down syndrome (Melanie Stephens)
June 24, 2019 - Partial preservation of neural/vascular activity in post-mortem pig brains (Winston Chiong)
June 10, 2019 - Off-label DBS for rare pediatric disorders (Philip Starr)
May 20, 2019 - Language-based learning disabilities in a prison population (Andrea Lollini)
May 13, 2019 - NIH BRAIN Initiative Neuroethics Roadmap (Winston Chiong)
March 25, 2019 - Architecture, design and dementia (Emi Kiyota)
March 11, 2019 - Qualitative and social research (Daniel Dohan & Katherine Rankin)
February 25, 2019 - Care for persons with Down syndrome who develop dementia (Melanie Stephens)
January 28, 2019 - The Parkinson’s disease mortality myth (Maya Katz)
January 16, 2019 - Unanticipated side-effects and investigator-participant relationships in aDBS for chronic pain (Prasad Shirvalkar)
November 26, 2018 - Linking social neuroscience and the traditional social sciences (Dan Dohan & Katherine Rankin)
November 19, 2018 - Consent for data sharing in dementia research (Jalayne Arias, Renaud La Joie & Jen Yokoyama)
October 22, 2018 - Artificial companions for older adults with cognitive impairment (Elena Portacolone)
October 8, 2018 - Consent and recruitment in neurophysiology studies (Joncarmen Mergenthaler)
September 24, 2018 - Personality changes in deep brain stimulation (Tobias Haeusermann)
September 10, 2018 - Experimentation in human brain model systems (Galen Dods)
August 27, 2018 - Position paper on dementia care ethics (Winston Chiong)
July 9, 2018 - Using genetic ancestry sites for criminal investigations (Jalayne Arias, Joanne Taylor, Jen Yokoyama & Jamie Fong)
June 25, 2018 - Capacity to marry and to consent to sex in dementia (Joanna Hellmuth & Mahnoor Allawala)
June 11, 2018 - Professionalized intimacy – care in the dementia village (Tobias Häusermann)
May 14, 2018 - Opioids in elder populations (Monroe Butler)
April 16, 2018 - Patient and caregiver perspectives on physician assisted death in ALS (Catherine Lomen-Hoerth)
April 2, 2018 - FAA regulations and preclinical Alzheimer’s biomarkers (Matt Lawrence)
March 25, 2018 - California End of Life Option Act working meeting
March 12, 2018 - Brain death and the Jahi McMath case (Sharon Kaufman)
February 12, 2018 - Cognitive testing and political leaders (Jalayne Arias)
January 25, 2018 - Palliative medicine (Krista Harrison)
January 11, 2018 - Ethical issues in the management of patients with dementia (Winston Chiong)