Nordic eInfrastructure Collaboration Conference 2017 – Workshop on Bioethics of databanks and data sharing
Umeå, Sweden, 29 May
New technologies enable the accumulation of large amounts of genetic data, biometric data and health records. Also, mass of data from biosensors of individuals or automatic monitoring of patients are being generated. Finally, personal data from social networks and online accounts are being gathered and mined by companies. The proper handling, security and use of such data is important in the current age of internet and information technologies. Safeguards are needed that protect individuals while enabling the use of the data for the benefits of society, research or business. However, many of the ethical and societal questions concerning the storing and sharing of the data are not recognized and unresolved by society, researchers and companies.This session will focus on investigating key ethical and societal issues related to:
- The impact of large-scale data sharing on individual privacy
- The role of informed consent in the management of large-scale data sharing
- Potential ethically-robust solutions for responsible data sharing
Facing Death: End of life decisions
Reykjavik, Iceland, 15 SeptemberWhile developments in modern medicine have increased the possibilities of prolonging life and treating symptoms of incurably ill patients, prolonging life is not always considered the most appropriate goal of medicine for terminally ill patients. In order to diminish suffering, end of life care sometimes includes interventions that may lead to the hastening of death. Whether or not such care can or should include the possibility of euthanasia or physician-assisted suicide (PAS) is increasingly debated. At least since 2002, when the Netherlands and Belgium became the first countries in the world to legalize euthanasia, there has been a growing interest in many Western countries to take similar legislative action. Four states in the US have legalised PAS followed by Canada in June 2016. The latest landmarks in Europe include the law passed by the Belgian legislature 2014, which permits the euthanasia of children. In September 2015 a bill on assisted dying was declined in the House of Commons in the UK.Although assisted death or euthanasia is not allowed in any of the Nordic countries surveys show growing support among the public for it. The data from the European Values Study (EVS) shows for instance that acceptance of euthanasia in Iceland has increased substantially from 1984 when nearly half of the adult population was of the opinion that euthanasia was never or hardly ever justifiable to being supported by 75% in a survey published in 2016. Also there have been some cases of individuals going to Switzerland for this service. The aim of this conference is to discuss the ways in which the Nordic countries can learn from the experience on assisted death in Europe and North America.
For medical professions, policy makers and academics.
The conference will be organised in cooperation with the Centre for Ethics at the University of Iceland.