Week 3 – Inclusive Ethics in Ageing Research

NEW HORIZON: INCLUSIVE ETHICS IN/FOR AGEING RESEARCH

24th November (Wed), 4pm CET/ 3pm GMT (120 min)

As part of the AGENET’s larger Ethics Collective the third week hosted a workshop about how to make the ethics of fieldwork with older and cognitively impaired participants more inclusive.

AGENET WORKSHOP: Ethical issues in ethnographic research with older adults living with cognitively impairing conditions

This workshop is part of the AGENET’s Slow Online Conference as well as the AGENET’s Ethics Collective, the initiative launched to collectively address the challenges which ethnographers encounter when conducting research with older adults who live with cognitively impairing conditions and/or lack capacity to consent to research participation.

Workshop Organizers: Cristina Douglas (University of Aberdeen), Barbara Pieta (Max Planck Institute for Social Anthropology), Dr Matthew Lariviere (University of Bristol) and Dr Maria D.Vesperi (New College of Florida)

Overview

Over the last decade, ethical frameworks have become increasingly regulatory and, some may argue, restrictive on how ethnographic research should be conducted. This form of regulation is even more dominant when research involves vulnerable groups (e.g., children, adults lacking capacity to consent, prison inmates). In some national contexts, legal frameworks mandate ethical approvals from designated committees for research involving these groups. However, despite their intention for protecting participants, these ethical approvals have been criticised as bureaucratic exercises, static and predictive in a highly socially dynamic and spontaneous research context, exclusionary with those they intend to protect or even straightforward unethical. On the other hand, the lack of any ethical regulation for research conducted with adults who may lack capacity to consent can also create a huge burden on ethnographers. For instance, they may lack the necessary peer or expert support for what is the best approach to situations that are ethically challenging in the field or when writing. Similarly, they may worry about publishing considering the increasing requirements from peer-review journals for statements about ethical approvals. The workshop was inspired by a lively discussion on ethics with vulnerable groups that was held as a panel during the EASA 2020 conference.

Aim

During this workshop, we intend to stimulate some debate about what the best approach would be in certain situations that created ethical challenges for ethnographers conducting research with adults who lacked capacity to consent. The role of this exercise is to learn how ethnography as a body of knowledge and research practice is shaped by ethics and how ethnography can also offer lessons on what ethics could look like. The case studies/vignettes we propose are meant to be exercises of ethical and ethnographic imagination of how to address challenges that may be constitutive to our research.

Workshop Organizers

* Please note that the workshop organizers are also Guest Editors of the Special Issue of the Journal of Aging Studies, entitled Ethical Concerns: Envisioning Ethnographic Fieldwork with Cognitively Impaired Older Adults. The call for abstracts/papers is now open, and will close on 12th January 2022. See here for more details.

Cristina Douglas is a medical anthropologist, currently undertaking her PhD at the University of Aberdeen, Scotland. Her research interest focuses on human-more-than-human relationships at the end of life with dementia. She has a long-standing interest in ethical issues emerging in research involving adults who may lack capacity of consent. She has co-convened the panel on ethical concerns related to research involving participants with an impairing condition, held during EASA 2020 conference (with Prof Maria Vesperi and Barbara Pieta). Currently, Cristina works in a project at the University of Edinburgh that investigates ethics governance across Scottish universities.

Barbara Pieta is a PhD candidate at Max Planck Institute for Social Anthropology in Halle, Germany. During her ethnographic fieldwork in a town in Northeast Italy, she explored how people living with dementia and their family members seek to maintain fragile balance between autonomy and care. This fieldwork sparked Barbara’s interest in how local debates about (inter)dependence in the context of dementia shape the politics of ethnographic representation. At EASA 2020 conference, with Cristina Douglas and Maria Vesperi, she organized the panel on ethical challenges involved in ethnographic fieldwork with individuals who live with cognitively impairing conditions (e.g.dementia, autism).

Dr Matthew Lariviere is Lecturer in Social Policy at the University of Bristol. Matthew’s research explores the possibilities of digital technology within social care and ageing futures. In 2020, the N8 Research Partnership recognised Matthew with a New Research Pioneer Award for this research on emergent technologies to support ageing in place. Since January 2020, Matthew has been the Reviews Editor for the International Journal of Care and Caring. He regularly reviews for multiple peer-reviewed journals on topics related to ageing, digital health, and care. Matthew is an elected Fellow of the Royal Anthropological Institute.

Dr Maria D. Vesperi is professor of anthropology at New College of Florida and Executive Coordinating Editor of Anthropology Now.  A former trustee of the Poynter Institute and Tampa Bay Times staffer, her publications include City of Green Benches, the co-edited volumes Anthropology off the Shelf and The Culture of Long-term Care, and contributions to numerous anthologies and journals in her field.  Maria has decades of experience in conducting ethnographic research with individuals living with dementia. She has chaired her college’s institutional review board in the U.S. for many years, and in Europe she has co-organized (with Cristina Douglas and Barbara Pieta) the panel on ethical concerns related to research involving participants with an impairing condition, held during EASA 2020 conference.