Day 2 of the conference got off to an early start, beginning with several special interest group meetings, followed by a full day of concurrent sessions, including two from our own group.
CBS Neuroethics Interest Group
This year the Neuroethics Interest group welcomed its new chair, Dr. Barbara Russell, bioethicist at the Centre for Addiction and Mental Health and member of the Joint Centre for Bioethics at the University of Toronto in Toronto, Ontario. The group spoke on the CBS Executive decision on the status of the Canadian Neuroethics Interest Group, governance of the group, and the development of a tab on the (currently under re-development) CBS website for the Group. Representatives from the three main neuroethics research groups in Canada gave updates on current happenings at their respective facilities. Syd Johnson reported from the Novel Tech Ethics at Dalhousie University; Lucie Wade reported from the Neuroethics Research cohort at the IRCM in Montreal; and I reviewed the current research activities of the Neuroethics group at the University of British Columbia. The whole interest group spoke to a need for a clinical neuroethics community to discuss cases that come up in front-line work. Those who were calling for case-based discussion were not only clinicians, but bioethicists as well. Next steps include plans for thinking about a special journal issue which includes a clinical neuroethics case, followed by invited follow-up.
Protecting or Silencing: The benefits and harms of community confidentiality — Elana Brief, National Core for Neuroethics, University of British Columbia.
Dr. Brief spoke about the implications of adhering to community confidentiality in the work she is doing collaboratively with a remote First Nations community. The joint decision between the researchers and community members to keep the name of the community confidential arose from the desire to protect the community from potential stigma: one family in the community carries a genetic mutation leading to early onset familial Alzheimer’s Disease. The theme of CBS this year is “Voices of Communities”. Dr. Brief questioned whether adherence to community confidentiality protected or silenced the community (or both, or neither). Some of the implications of community confidentiality, as described anonymously by one member of the community was that the community cannot act on the results of the research if they remain unnamed. Of particular concern is the desire to build a long-term care facility. The research results could add strength to their claim that they need a facility built. As well, the community, who is very active in designing and implementing the research plan will not receive any recognition for their work if they remain unnamed. On the academic side, Dr. Brief cannot refer to existing literature from the community or describe people’s experiences in their own language – as this would identify the community. There was a good discussion about the complexity of the work and there was general agreement that it is only with community direction that one can make decisions around adhering to or abandoning confidentiality.
Trusting Experts, Epistemic Humility, and Listening to the Voices of People with Impairments — Anita Ho, Assistant Professor, W. Maurice Young Centre for Applied Ethics, UBC, and Ethics Service Director, Providence Healthcare, Vancouver, B.C.
Professor Ho’s presentation spoke to the relations of power that exist in institutional frameworks in which medical experts define ‘impairment’, or disability issues. Ho argued that health care providers are indeed well-intentioned in their clinical judgments and possess the necessary knowledge to diagnose various conditions. However the designation of ‘experts’ or ‘expertise’ give professionals a type of moral authority to make assessments regarding treatment and quality of life for the patient, often without giving weight to the patient’s experience of their care. This professional and moral authority, however, often neglects voices of the patients the recommendations are intended to benefit. When their voices are heard, they tend to be dismissed as merely subjective or misguided. This is problematic as the professional-patient relationship is one of trust, and in this one-way-street trust relationship the truster (patient) vulnerable to the trustee (physician). One result of the lack of trust is that patients with impairments are less likely to seek the treatment they require. To help reduce these power imbalances and empower the voice of people living with impairments, Prof. Ho argued for a commitment to an epistemic humility, in which a two-way collaborative approach between professionals and people living with impairments can occur, thus promoting a legitimate relation of trust, and and one that is essential in ensuring responsive practice and policies.