On the last neuroethics seminar before our unexpected hiatus, Yvonne Kapila and Ahmed Alsaleh joined us to discuss informed consent guidelines for dental and periodontology care in older, cognitively impaired adults. Periodontal disease is often overlooked in patients with dementia and Alzheimer’s Disease, yet the prevalence of both cognitive impairments and periodontal diseases increases with age. Yvonne and Ahmed introduced several case studies where patients with varying degrees of cognitive impairments underwent care for dental implants and dental infections. In these cases, informed consent procedures created challenges for clinicians who wondered if patients with impairments could adequately understand and consent to invasive procedures, some of which must occur over the span of several months and years.
The discussion focused on the risks and benefits of ongoing dental and periodontal care in older populations. As oral hygiene becomes more difficult, elder adults become susceptible to issues like root decay, dry mouth, osteonecrosis, and infection. However, dental restorations themselves can negatively impact quality of life in these same individuals, as dentures and dental prostheses require extensive maintenance and can come with a number of complications like infection. By the end of the discussion, the group wondered about the feasibility of implementing bioethical consults for dentistry or documents like dental directives. The discussion also underscored the importance of ethical frameworks of care for patients whose clinical indications require treatment regardless of cognitive status, as well as ongoing interdisciplinary collaborations between neurologists, geriatricians, and dentists.
The Responsive Neurostimulation (RNS) system is a closed-loop system that continuously monitors electrical activity in specific brain regions via electrodes and administers stimulation at the detection of seizure related abnormalities. It is the only FDA approved closed-loop stimulation device and has been implanted in approximately 3000 patients since 2013. However, our ability to develop technology often occurs more quickly than our ability to consider the ramifications of these technologies. During our first seminar back from the winter break, epileptologists Vikram Rao and Manu Hegde presented a series of case studies from their experiences with the device in their clinics to frame our discussion on emerging novel ethical concerns of RNS for epilepsy.
Much of the discussion was focused on the RNS device’s production of patient electrographic data, raising questions about its intrinsic value and the best ways to manage such data in epilepsy care. Some issues included navigating between patient self-report of seizure activity and brain data recorded directly from the device. Continuous recordings of brain data can be therapeutic for patients to compare or receive validation of their own experiences with seizures, but it also raises questions about the obligations of clinicians who, due to their access to the data, might be expected to review it more frequently at the request of their patients or use the data as evidence for or against seizure activity, particularly as it concerns patients’ abilities to partake in activities like driving. Additionally, Vikram and Manu detailed patient perspectives about the device’s capabilities, noting that some misguidedly likened clinician access to recording and stimulation of the brain to mind reading and mind control, respectively. These anecdotes showed how the complexity of the device created unexpected and novel challenges to epilepsy care. The group noted the importance of being able to recognize and articulate these emerging dilemmas, and the need to develop ethical frameworks to guide care as the RNS device becomes more sophisticated and widespread.
The final seminar of the year featured a works-in-progress by Dan Dohan. The group helped him brainstorm ideas for a grant he is interested in developing on cultures of responsible research in STEM laboratories. Our meeting began with an overview of social theories of culture, as explained by Lizardo and Strand in their article, “Skills, toolkits, contexts, and institutions: Clarifying the relationship between different approaches to cognition in cultural sociology.” We compared four approaches and perspectives of culture: classic anthropology, classic sociology, contemporary anthropology, and contemporary sociology.
In contemporary sociology, culture, that is, our ideology, values, or norms, are more powerful when times are socially unsettled – we tend to rely on them more to guide practice. On the other hand, during settled times, culture can work like a toolkit, where we can do things in ways that feel natural to us as individuals instead of relying on particular values or norms. These toolkits form cognition because they are ingrained into how we think and act.
Technological advances can regularly unsettle biological science fields and raise new ethical concerns. Our discussion explored how particular sites in biological science fields do or do not display lab culture, including how to identify the inherited values of team members that have followed them through their experiences, and how their resulting behaviors in new or different groups can change or upset existing ethical cultures. We also spent some time creating strategies to identify the goals of calls for grants that institutions put out, as these institutions have particular ideas and thinking about culture engrained in them already.
Today’s seminar was led by Toby Haeusermann and Celeste Fong, discussing a recent review they wrote with fellow Decision Lab member, Cailin Lechner, on the book The Origins of Bioethics: Remembering When Medicine Went Wrong by John A. Lynch. They presented an overview of the three case studies included in the book (the Tuskegee Syphilis Study, the Willowbrook Hepatitus Study, and the Cincinnati Whole Body Radiation Study), followed by a summary of how, and why, the author depicted public remembrance of the events as either minimal remembrance or meaningful forgetting.
The primary criticism of the book is that it is less about the history of bioethics as a field as much as it is an analysis of how bioethics events are presented to the public to foster remembrance (or perhaps, forgetting). As such, the discussion gravitated towards how institutions and the public could best present bioethics cases honestly, with an accepting of responsibility and duty to improve without instilling unwarranted fear or mistrust in the community.
Emily Murphy led a works-in-progress investigating how neuroscience can reframe approaches to poverty policy. She began with the claim that current policy/poverty mechanisms embody political assumptions about who is deserving of certain benefits and who is not. For example, bureaucratic disentitlement can often involve multiple steps and may be intentionally complicated to filter applicants based on those who are most motivated to go through the trouble to apply and are then presumed to be most deserving of the benefits. However, making deliberately inconvenient policies as a distributive mechanism ignores scientific evidence suggesting that poverty can itself undermine brain health and cognition. Thus, policies that impose high cognitive and effort demands as part of their design may be regarded as discriminatory.
Our discussion considered the role of scientific evidence in policy depates. We also considered potential implications of reframing poverty policy in terms of brain science. Could, e.g., such work promote a sort of determinism to socioeconomic status; that poor people are somehow pre-determined to remain poor? Or might research supporting the claim that poverty causes cognitive deficits be interpreted to mean that economic disadvantage is a form of cognitive disability? Such arguments could have broader implications beyond neuroscience and poverty policy, then involving quesions realted to stigmatization and the appropriation of claims made regarding the rights of disabled people.
October 16, 2019 - Capgras syndrome in Lewy Body Dementia (Sarah Dulaney and Jennifer Merrilees)
October 2, 2019 - Who should obtain consent for human intracranial electrophysiology studies? (Cailin Lechner)
September 18, 2019 - Hypersexuality in Lewy Body Dementia (Sarah Dulaney and Jennifer Merrilees)
September 4, 2019 - “Neurohype” and public impressions of research (Winston Chiong)
August 7, 2019 - The Pre-Caregiver in Preclinical Alzheimer’s Disease (Jalayne Arias)
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)