Photo of panel discussants members. Photo: Maria Yohuang
On October 12th, NEAR and the Comparative Research Center Sweden (CORS) held a seminar entitled “Ethical Perspectives on Data Usage in Research Infrastructures”. The seminar aimed to understand the ethical aspects of using secondary data in research infrastructures. During the afternoon, around 100 participants attended, on-site or online, to listen to the seminar, which involved representatives from authority, research, infrastructure, juridical, and philosophical perspectives.
Photo of Johan Modin and Björn Halleröd. Photo: Maria Yohuang
Björn Halleröd, Professor in Sociology at the University of Gothenburg and Chair of the external Steering Group of NEAR moderated the day. Johan Modin, Director of the Swedish Ethical Review Authority (SERA), presented perspectives from SERA’s point of view. Along with protecting research subjects, the authority’s primary purpose is safeguarding and upholding trust and confidence in research. Research ethical tools are informed consent, assessment of risk vs. benefits, and choice of research subjects. Johan also informed about situations in which the Ethical Review Act (2003:460) applies and the requirements for approval. For example, all research must be conducted with respect for human dignity and research participants’ risks must always be counterbalanced by the scientific value of the research project.
Photo of Hugo Westerlund och Henrik Ekengren Oscarsson. Photo: Maria Yohuang
Hugo Westerlund, Professor of Epidemiology at Stockholm University (SU) and the Director of Relations, Work and Health across the life-course – a Research Data Infrastructure (REWHARD), and Henrik Ekengren Oscarsson, Professor of Political Science and Electoral Studies, University of Gothenburg (GU) and Director of the Swedish National Election Studies Program (SNES), presented perspectives from research and infrastructure perspectives. They talked about the importance of upholding research infrastructure for the highest possible use of data cost-efficiently, as well as enabling more high-quality and high-powered research. Infrastructures can also decrease survey weariness, enable better data control, improve generalizability, and retain and strengthen Sweden’s position in research. Research requires ethical permission and can only be obtained for specific research projects. Infrastructures are not predefined projects. This can be problematic in light of scientific discovery, academic freedom, and innovation. Suggestions for reforms to the Ethical Review Act are 1) appropriate legislation and ethical vetting for research databases/infrastructures; 2) a fast track for ethical vetting for specific research projects in terms of emergency; 3) a holistic perspective to the ethical approval process; 4) the possibility of applying for ethical approval for master thesis retrospectively. Moreover, a legal and administrative framework for ethical vetting of research databases is needed and there should be a clear framework for safeguarding sensitive data.
Photo of Lena Wahlberg. Photo: Maria Yohuang
Lena Wahlberg, Associate Professor of Jurisprudence, specializing in Medical Law, Lund University (LU), focused on ethical data usage from a juridical and theoretical perspective. She presented the Ethical Review Act (2003:460)
- The act protects individuals and respects human dignity in research.
Requires an ethical review of research that:
- Includes the handling of sensitive personal data or personal data regarding crimes
- Involves the physical intervention of a living or deceased person
- Use a method that aims to affect or create an apparent risk of injuring the research subject physically or mentally.
- Relates to the study of biological material that can be traced to a living or deceased person.
In some respects, the Act is too inclusive, and the relationship between the Act and the Swedish Principle of public access to information is complicated. Moreover, violations can lead to a tangled combination of consequences such as a fine or imprisonment for two years, withdrawal of publications, termination of employment, and fewer opportunities for future funding. There has been criticism of the Act, and an investigation is currently ongoing, appointed by the Government Offices. At the same time, some research of potential ethical concern falls beyond the act’s scope, including research that seems relevant vis-à-vis the act’s aim to protect respect for human dignity. Simply put, human dignity means that everyone has intrinsic value as a member of the human species. Human dignity can be violated in various ways, e.g., by treating a person as an object/commodity, verbally humiliating someone, changing the nature of the human species, or not respecting a person’s autonomy.
Photo of Torbjörn Tännsjö. Photo: Maria Yohuang
Torbjörn Tännsjö, Professor Emeritus of Practical Philosophy, presented his view on data usage from a philosophical perspective. He spoke about scenarios where medical samples were collected a long time ago. No informed consent was obtained for the use we currently want to make of them. This issue was discussed from the perspective of three moral theories: 1) Moral rights (Locke/Nozick); 2) Deontology (Immanuel Kant); and 3) Utilitarianism. The moral right principle relates to owning yourself morally, and you have an absolute right to integrity. You have the right to consent to what you feel is right for you (even if it means your death), but no one can invade your property (your body) without your consent. Kant argues from the perspective of human dignity that one should never treat a human being as a mere means. The final moral principle, utilitarianism, strives to maximize happiness. This is difficult to apply since we do not know what would happen if we acted in one way versus what would happen if we acted differently. How would most people react if they learned that we used their material without explicit consent? Torbjörn’s conjecture: “With complacency! People aren’t that concerned”.
Photo of panel discussants members. Photo: Maria Yohuang
Following the presentations, the speakers from authority, academic, political, and juridical perspectives participated in a panel discussion for which they were joined by Lina Nordquist, Spokesperson for Health Care Policy, Liberalerna (L) and Associate Professor, Uppsala University (UU), as well as Mats Gustavsson, Data Protection Officer and Lawyer, Karolinska Institutet (KI). Among other things, a discussion on the need for legislation for infrastructures, not specific research projects took place. Overall, everyone agreed on the need for continued discussions and dialogue between all sectors on improving and developing ethical legislation on data usage in national infrastructures.
The Scientific Communicator of NEAR, Linnea Sjöberg, presented NEAR and talked about older adults’ health at a seminar arranged by Länsnykterhetsförbundet, Västra Götaland on 24 February, 2022.
Around 200 persons attended the seminar and it rendered discussions on the importance of studying health in older persons, aging in Sweden and globally from demographic- and historical perspectives, as well as risk- and protective factors in relation to older adults’ physical and mental health.
Read the full invitation letter and program here
The Scientific Communicator of NEAR, Linnea Sjöberg, presented NEAR at the virtual morning coffee meeting with the Center for Alzheimer Research (CAR) at Karolinska Institutet (KI), 1 December 2021. The seminar rendered a lot of discussion on the possibilities and potential use of the NEAR data among the participating researchers.
Photo of Linnea Sjöberg by Maria Yohuang
The NEAR Director, Laura Fratiglioni had the opening lecture with the title: “Aging research: achievements, current challenges and future perspectives” at the Swetaly Ageing online research seminar 28 September 2021. The host for the research seminar was University of Gothenburg.
The Strategic Research Area Neuroscience (StratNeuro) will hold a lunch Webinar with the title: “The Ageing Brain” on April 12. The NEAR Director, Laura Fratiglioni and NEAR Scientific Advisory Board member, Miia Kivipelto, will participate and talk about: “Dementia in older adults: the body-mind connection”, respectively “Multidomain precision prevention for dementia and Alzheimer’s disease: new findings from World-Wide-FINGERS trials”.
KI’s resource group for the health of the elderly during covid-19 invites to a webinar where prominent researchers from Norway, Denmark and Sweden present and discuss the Covid-19 pandemic in relation to the organization of elderly care in each country.
(In respective language. Not in English)
Tuesday 10 November, 11:30AM–1:15PM
On Zoom: https://ki-se.zoom.us/j/61182752103
The webinar “Medical care of elderly during the Covid-19 pandemic, with eight months of experience” took place online on 12 October. The webinar (in English and Swedish) can be watched in full length below and the program here.
It was introduced by Professor Maria Eriksdotter and Ole Petter Ottersen, President of Karolinska Institutet. The opening lecturer was Professor Kaisu Pitkälä, University of Helsinki, who presented the successful Finnish work with controlling their Covid-19 outbreaks, their mobile testing teams and measures to mitigate the spread.
Experiences from the Stockholm geriatric health care was shared by Dr Martin Annetorp, who showed how useful data collection had been made despite the very difficult circumstances and Professor Dorota Religa, who pointed to the importance of frailty estimates in the care for the elderly.
In the final talk, Christian Molnar, head dr of the special care units in Stockholm, shared his experiences of the practical difficulties during the growing pandemic.
Professor Kaisu Pitkälä answering questions.
The resource group for elderly’s health with regard to Covid-19 at Karolinska Institutet is offering a lunch webinar on Monday, 12 October, at 11:45AM–1:30 PM. NEAR’s director, Laura Fratiglioni, will co-moderate the session on experiences from Finland. The webinar will be held both in English and Swedish (for regional reporting).
The 4th Swedish Meeting for cohort studies in Uppsala October 12th
The meeting will be held in English.
Arranged by: EpiHealth in Uppsala. Lars Lind.
When: Monday October 12th.
Time:1.00 – 5:00 PM
