Today we hosted an interdisciplinary conversation led by Dan Dohan, a sociologist of medicine, and Kate Rankin, a neuropsychologist and researcher of socioemotional function in the brain. We considered links as well as gaps between the traditional social sciences (such as sociology, anthropology, political science and economics) and the growing field of social neuroscience, examining different discipinary perspectives on a recent review in social neuroscience, “The Emerging Social Neuroscience of Justice Motivation” by Jean Decety and Keith J. Yoder.
Dan observed that social scientists and social neuroscientists, despite their shared interest in social phenomena, are largely interested in two very different aspects: social neuroscience being concerned primarily with workings “inside the head” and the social sciences being concerned primarily with interactions among people. Furthermore, some of the lines of evidence considered in the paper (such as behaviors of macaques and cleaner fish, or the expectations of infants) may have mechanistic relevance for describing the evolutionary or developmental origins of prosocial motivation, but are not straightforwardly applicable to political or cultural understandings of justice. We also considered the worry that different terms may be used for different referents in different contexts, as well as more general transdisciplinary tensions over issues like funding and recognition. In addition, in reviewing the history of other domains in which cognitive neuroscience has been applied to examine behaviors originally addressed in other fields (e.g., neuroeconomics, the neurobiology of language, and the neuroscience of moral reasoning), we noted that cognitive neuroscience has often built upon and borrowed from explanatory frameworks developed in older disciplines without radically altering how those original fields (e.g., economics, linguistics, moral theory) conduct their work.
In a journal club led by Jalayne Arias, Renaud La Joie, and Jen Yokoyama, we discussed consent for data sharing within dementia research, focusing on arguments presented in Consent recommendations for research and international data sharing involving persons with dementia by Adrian Thorogood et al.
Jalayne initially provided an historical review of the Bermuda Policies, the Henrietta Lacks case, and Havasupai Tribe of Havasupai Reservation v. Arizona Board of Regents. With this background in mind, some felt that the article missed an opportunity to address issues unique to patients with dementia and to data sharing in a research context. Rather than describing the complexity of capacity assessment for individuals with varying degrees of cognitive impairment, the difficulty of balancing duty to protect patients from exploitation and duty to respect patients’ right to participate in research, or the barrier to international research collaboration presented by inconsistent data sharing laws, the article addresses vulnerable populations and consenting challenges in general. Members of our group shared personal experiences addressing contradictory patient and caregiver claims, managing double de-identified patient data, and hesitating to share data within a competitive research environment. It can be a challenge to clarify the concept of data sharing so as to accurately inform patients and debunk slippery slope arguments about what researchers can and cannot achieve with an individual’s data.
Reflecting on public mistrust of biomedical research as a result of infamous studies, like the Tuskegee syphilis experiment, we emphasized our responsibility to cultivate a positive relationship between research participants and UCSF as an institution. We also recognized the public’s call for penalizing researchers who violate data sharing policies beyond academic black listing. Regarding research involving disenfranchised or stereotyped groups, we deliberated the possibility of including a community representative within the consent committee.
UCSF Assistant Professor of Sociology Elena Portacolone explained the genesis of her work-in-progress on the ethical conundrums of artificial companions designed for adults with cognitive impairment, and solicited feedback from the group. We specifically discussed issues associated with a pet avatar that expresses words of affection and is controlled by remote technicians. Throughout our conversation, problems of deception, privacy, and informed consent proved to be ethical grey areas.
At its worst, the avatar promotes an illusory companionship that detracts from real human interaction, and unknowingly surveils users, thereby violating their right to privacy. At its best, it comforts people without access to a human support network, serves an affordable care option, postpones the need for institutionalized living, and ameliorates feelings of loneliness. We addressed the tradeoff between privacy and companionship, as well as the challenge of establishing an informed consent process for an inherently deceptive product, the benefit of which might be lost upon drawing back the curtain on its behind-the-scenes operations. We referred to an earlier seminar on dementia villages and a recent New Yorker article when evaluating this controversial approach to care, which may support patients’ subjective wellbeing and happiness while reinforcing their altered sense of reality. Regarding insufficient regulation of artificial companion technologies, we were concerned about the lack of public awareness of the lag between innovation and policy.
Joncarmen (JC) Mergenthaler led a works-in-progress seminar about his current investigation into consent and recruitment within intracranial electrophysiology studies, which require utilization of patients with preexisting cause for neurosurgical treatment, such as epilepsy or Parkinson’s disease. Adding research to clinically-indicated neurosurgery introduces an array of ethical concerns, from increased time on the operating table to conflict of interest to therapeutic misconception. JC presented preliminary findings from 11 of 26 semi-structured interviews with members of neurophysiology research teams, and our group discussed common themes, including standardization, consent processes, unique risks, and vulnerability.
The initial evidence reveals diversity in who introduces the study to the patient, who obtains consent, and when consent is obtained. We weighed the benefits and detriments of having a neurosurgeon act as the consenting team member; for instance, the advantage of providing expert knowledge to patients versus the risk of conflating clinical treatment with research practice. We also explored possible explanations for the widespread perception among PIs that their research protocol aligns with that of similar studies despite inter-study inconsistencies revealed by the data. When discussing efforts to prevent enrollment of “desperate” or misinformed patients, we questioned the methods by which these studies assess patients’ capacity to consent and comprehension of research-specific risks. We contemplated the use of third-party consent monitors as well as the limits of online survey tools for evaluating capacity.
In a journal club facilitated by Tobias Häusermann, we discussed concerns within the neuroethics community that patients undergoing deep brain simulation (DBS) could experience changes in personality, identity, agency, authenticity, autonomy, and self. Using Frederic Gilbert et al., “Deflating the ‘DBS Causes Personality Changes’ Bubble” as a starting point for our conversation, we explored the apparent disconnect between theoretical neuroethics and clinical experience, as demonstrated by the scarcity of robust empirical evidence for such changes in over 1500 papers. However, we also considered the risk of misinterpretation as a consequence of generalizing over these studies, which address different aspects and applications of DBS.
Our interdisciplinary discussion was informed by a few special guests, including Agnieszka Jaworska from the UC Riverside Department of Philosophy and Jill Ostrem from the UCSF Movement Disorders and Neuromodulation Center. We discussed current treatment outcomes for patients with Parkinson’s disease, the potential for DBS as a treatment in psychiatric disorders, and the argument that specific brain targets warrant different levels of ethical concern. We noted the striking difference in public response to DBS compared to other therapeutic technologies, like cardiac pacemakers, and questioned whether low adoption of DBS stems from its actual clinical effects or its symbolic significance. With input from the social sciences, we considered how marketing and shifting cultural metaphors may influence public perception of DBS. Reviewing challenges previously encountered in tracking behavioral changes in neurodegenerative diseases such as bvFTD and ALS, we also considered that the question of what personality changes may be attributable to DBS will only become more difficult and more urgent with future envisioned applications.
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)