Report: Ethics of health care and research in small-scale communities, Tórshavn, September 12, 2019

In September, 2019, the NCBio held a conference that gathered over 110 people in Tórshavn to discuss some of the main ethical challenges and considerations of the Ethics of health care and research in small-scale communities.

Videos of each talk, as well as QnA sessions, are available

Currently, health care professionals and researchers receive little support in addressing the complex ethical issues of working in small-scale communities. This conference discussed the main ethical challenges regarding accessibility to health care and priority setting, privacy and confidentiality, and stigmatization, when providing health care and conducting research in small-scale communities and explored potential solutions to address these challenges.

The conference Ethics of health care and research in small-scale communities was held on September 12, in the new auditorium Kongshøll, of the University of the Faroes Islands. The mayor of Tórshavn, Annika Olsen, welcomed the over 110 people registered for the conference, many of which were health-care professionals or students of a master programme in nursing. 

The most commonly cited ethical challenges of healthcare in small-scale communities are Confidentiality, Allocation of healthcare resources, Overlapping and dual relationships and Different understandings of health for self/community. Keynote speaker Christy Simpson opened this discussion with a perspective from both her research across Canada as well as personal experiences. She discussed both the advantages and challenges of living in small-scale communities and posed key questions for the ethical implications for healthcare and personal relationships. Christy Simpson is the head of the Department of Bioethics, Dalhousie University, Canada. Watch the video

The first case study of the conference was presented by Elísabet Hjörleifsdóttir, associate professor of the University of Akureyri, Iceland. From the perspective of healthcare in small-scale communities in Iceland, she discussed end-of-life decision-making and palliative care. She lifted a discussion of end-of-life care at home or at a hospital. Watch the video

Sigfríður Inga Karlsdóttir of University of Akureyri presented the second case study, with key considerations for safe and high quality reproductive and maternal healthcare. She also brought up the ethical considerations of closing down healthcare in small-scale communities with a discussion of quality and continuity of care. This was highlighted by an illustration of how many healthcare professionals can be involved along a pregnancy and birth. Watch the video

Per-Daniel Liljegren, Region Västerbotten, and Anette Edin-Liljegren, Umeå University, presented their experiences of working and living in small-scale communities in Northern Sweden. Among other things they brought up challenges in recruiting expertise, mixed roles of professionals and efforts to combat high numbers of suicides. Watch the video

Noomi O. Gregersen is the project leader of the FarGen project, mapping and studying the dna of the population of the Faroe Islands. She presented some of the results so far, and discussed ethical dilemmas and lessons learnt in getting people to participate in the genetic biobank registries. Watch the video

Researcher Ann Ragnhild Broderstad of the Arctic University of Norway and the head of the Saminor study discussed some of the issues in doing research with indigenous populations. There are no ethical guidelines in Norway, Sweden nor Finland for doing research on indigenous populations, and there is a collective, historical memory of research done in history on Sami people, making many sceptical to be part of research today. Watch the video

Gert Mulvad has worked as a medical doctor in Greenland for over 30 years. He discussed ethical issues of both research and healthcare in Greenland, where all indigenous populations are also small-scale communities. Most research in Greenland is done by people coming from outside, but Gert Mulvad argued for the importance of the people in Greenland defining the needed research questions and find the answers in collaboration with others. Watch the video

Keynote speaker Peder Jest, Medical director of Odense University Hospital, Denmark discussed ethical considerations of technology and innovation in healthcare. While innovations and technology has helped our progress in the past and has a lot of potential for the future of healthcare, they may also create new ethical challenges. Watch the video

As the last talk of the conference, the General Secretary Jónvør Christiansen and Chair Tóra við Keldu of MEGD discussed the issues from a patient and community perspective. MEGD is an umbrella organisation in the Faroe Islands for organisations representing a wide range of people with different diagnosis, handicaps and challenges. Through outreach to their member organisations they have mapped what these patient groups and community representatives see as ethical dilemmas in small-scale communities. Watch the video

You can find the full playlist from this conference here