News at IFV

Digital health data has become an asset for research, with actors in both the public and private sector competing for health-related data from the European public. A preference study covering residents in 12 European countries, just published in Journal of Medical Internet Research, points to the need prioritise transparency and oversight to be prioritised for public acceptance for using data in different contexts.

Borderline personality disorder is characterised by difficulties regulating and containing negative emotions and is associated with dysfunctional coping-mechanisms like self-harm and suicidality. Patients with this disorder are over-represented in compulsory care. But compulsory care sometimes increases suicide risk in patients. A paper recently published in Clinical Ethics explores whether compulsory care is ethically justified for these patients and finds that in most cases – it isn’t. 

Restraining patients is common practice in healthcare, not only in psychiatric care but also in somatic care settings. The practice is regulated in different ways in different countries, but with one major challenge everywhere: ensuring patients with reduced decision-making capacity get the care they need while simultaneously making sure patients with sufficient decision-making capacity are not forced to receive care they don’t want. A recent publication issues recommendations for how to regulate the use of restraints, whether physical or chemical, in somatic healthcare. 

We open a Call for Papers to the Uppsala University Medical Ethics Conference (UMEC) 2024. addressing the issues mentioned across the different tracks presented below, and going beyond. Please submit your abstract of maximum 250 words no later than March 31th, 2024. 

“Pregnancy and breastfeeding can be a chaotic period, exacerbated by lack of safety information for drugs taken during this time. The IMI ConcePTION project aims to change that.” So reads the first paragraph of the Uppsala Monitoring Centre’s feature about ConcePTION. Published today, this article describes the ins and outs of the ConcePTION project, and how they are all connected. 

There is a gap between bioethical theories and everyday moral decision making in general practice. A recent paper in BMC Medical Ethics makes sense of how GPs frame problematic situations in moral terms, exploring common denominators behind every day moral decision-making. The paper is using grounded theory to develop a new theoretical approach to general practice ethics.

"With a little detour via Australia, Healthier Wealthier Families makes its way to Sweden" - says the Glasgow Centre for Population Health (GCPH) on their blog when writing about the implementation of the 'Healthier Wealthier Families' model in Sweden in which our research team is involved.

Research on patients who have impaired consciousness, especially those who acquired severe brain injury or who have suffered from prolonged disorders of consciousness, has exploded in the last decade, not least within the Human Brain Project. With two international guidelines (one from Europe and one from the United States) available to facilitate care for these patients, a recent survey of 216 professionals from 40 countries finds there is still no consistency of care procedures for patients with prolonged disorders of consciousness across countries and clinical settings.

Research ethics committees (RECs) play a crucial role in protecting children’s rights in research. But there is a lack of comprehensive research on how members of research ethics committees perceive and evaluate research involving children with serious physical illnesses, such as cancer. A recent paper published in Research Ethics reporting on research ethics committee members perspectives on pediatric research highlights the importance of recognizing both children’s rights to participation and protection. It also suggests that committee members predominantly focus on formal requirements and legal compliance in ethical review.

Whether a treatment can benefit a patient is often considered in criteria for health care priority setting. But we rarely consider indirect effects for the patients, or the patient’s children, friends, or partner. A recent paper published in Bioethics asks whether such relational effects could be relevant for priority setting, for example when patients suffer from dementia, where novel treatments for Alzheimer's disease could have real benefits for family and friends.  

There are good reasons to expect individuals to take responsibility, for example by getting vaccinated. When it comes to vaccinating children, the benefit-risk ratio is different for COVID-19 then for example, because children are not as severely affected. In a recent publication in Public Health Ethics, Jessica Nihlén Fahlquist suggests that children should be encouraged to take responsibility for vaccination, both for themselves, for others, and for the benefit of public health.

The Swedish Medical Society’s delegation of ethics recently released a statement on the ethical problems associated with Whole Genome Sequencing. The technique has been crucial in identifying the cause of numerous diseases that were previously unknown, and for diagnosis of rare diseases. Whole Genome Sequencing is increasingly used as a diagnostic tool in healthcare to improve diagnosis and treatment. However, the statement draws attention to three ethical problems associated with the use of this technique, namely how to handle secondary findings, unclear findings and informed consent.

De senaste åren har det arbetats systematiskt med innovation inom den gotländska hälso- och sjukvården genom projektet Innovationssystem Gotland. Anna Sarkadi, Professor vid Institutionen för folkhälso- och vårdvetenskap, har varit senior rådgivare till projektet.

Each year, more than 40 000 children worldwide are diagnosed with cancer and research is vital to improve treatment, survival and quality of life for these children. But, recruitment of children for research comes with ethical challenges. A recent paper in BMC Medical Ethics points to the need for balancing ethics and empathy, and the roles of children and parents in shared decision-making.

Anna Sarkadi medverkadi i Dagens Medicin debatt.
Debattens ämne: "Med en lång tradition av arbete med kunskapsstöd, dataanalys och verksamhetsutveckling är barnhälsovården värd att ta efter, skriver tre debattörer." (Källa: DM)

In recent years, systematic innovation work has been conducted in Gotland’s healthcare sector through the Innovation System Gotland project. The project is part of the University’s strategic partnership with the Gotland Region. Innovationssystem Gotland (Innovation System Gotland) is an exciting example of how successful collaboration can be achieved, in this case between academia, the healthcare sector and Science Park Gotland.

The Department of Public Health and Caring Sciences is looking for a lecturer in caring science with a focus on the ethics of care. Caring sciences is at the core of Uppsala University's nursing programme, with a focus on evidence based care, applied in a professional, ethical and reflective way. In this role, you are also expected to have a close collaboration with the Centre for Research Ethics & Bioethics (CRB). Want to join our teaching team? Apply by 13 April 2023!

Forskare från Uppsala universitet har studerat teckningar med coronamotiv målade av barn mellan fyra till sex år. Resultatet visar att även yngre barn påverkades påtagligt av pandemin. Se artiklarna om forskningen och videon med barnens berätterlse och teckningar.

Research shows that only a small proportion of parents take advantage of the effective parenting support programmes that exist for children with disruptive behavioural problems. Read Anna Sarkadis view of society today and the current shootings that have increased during the 2020s in Sweden.

Awareness of the need for neurotechnology governance has led to calls for a new set of ‘neurorights.’ The neurorights proposal, however, has sparked a lively debate. In a new book several experts reflect on the challenges and promises of neurotechnologies and on existing and proposed regulatory frameworks. One suggestion is that the neurorights proposal would benefit from further reflection on the framing of problems and solutions and more active public engagement.

"Varför ska barn och unga anpassa sig till den digitala världen, hur beroende­framkallande, laglös och skruvad den än är? Skärp i stället reglerna för digitala plattformar, skriver flera debattörer." SvD
Anna Sarkadi, vår gruppledare bidrog i denna debattartikel.

The new 6-year education for medical doctors in Sweden is placing demands on Universities. At this very moment, efforts are being put into reformulating teaching and learning outcomes. One of those processes involves the learning outcomes for medical ethics. The authors are now inviting a discussion on the proposal with an opinion published today in Läkartidningen.

Conducting research with migrant populations, 4.5 hp.

Swedes with limited health literacy did not access their online health check results to the same extent as people with sufficient health literacy. That is the result of a recently published study in BMC Public Health by Erica Sundell and Åsa Grauman from Centre for Research Ethics and Bioethics together with Josefin Wångdahl from Karolinska Institutet. Differences in health literacy might also lead to unequal access to trustworthy and quality-assured health information.

"Healthier Wealthier Families" has been started in Härnösand municipality.

Åsa Grauman has been awarded 3,648,000 SEK from the Swedish Cancer Foundation for a research Fellowship to study how the public perceives their cancer risk, risk communication and how they make their trade-offs between changes in lifestyle and reduced risk for cancer. The grant is a three-year Fellowship.

Tidningen Vårdfokus har skrivit ett reportage med Lisa Hultin, Specialistsjuksköterska och Universitetsadjunkt i forskargruppen Vårdvetenskap.

"I dag är det internationella trycksårsdagen, en dag då vårdens professioner uppmuntras att ha extra fokus på arbetet med att förebygga, upptäcka och behandla de skador som uppstår när huden utsätts för tryck eller förskjutning, så kallad skjuv.

Det är en viktig dag tycker specialistsjuksköterskan Lisa Hultin. För trots att kunskapen om varför trycksår uppstår och hur de kan förebyggas utvecklar var sjunde inneliggande patient trycksår på svenska sjukhus."

Text: Sanna Björkman

Vår utvärdering i Skäggetorp var i nyheterna i Lokala Nyheter Öst.

Professor Ulrika Winblad at the Department of Public Health and Care Sciences has recently been granted almost SEK 17.5 million in environmental support from the Swedish Research Council for the application The new welfare markets in Sweden - how is social equality affected? The research will last for six years and is a collaboration between researchers at the Faculty of Medicine and the Faculty of Social Sciences at Uppsala University, more specifically the Department of Public Health and Care Sciences, the Department of Political Science and the Department of Business Economics. The collaboration also includes researchers from the University of Bergen in Norway and the University of Copenhagen in Denmark. Co-applicant researchers are Associate Professor Paula Blomqvist, Associate Professor Mio Fredriksson, Professor Josef Pallas, PhD Linda Moberg, Professor Karsten Vrangbæk, and Professor Oddvar Kaarboe.

This autumn saw one of the biggest breakthroughs of all time in Alzheimer’s research. At this year’s Olof Rudbeck Day on 21 October, Olof Rudbeck Award winner Lars Lannfelt, Senior Consultant and Professor Emeritus of Geriatrics at Uppsala University, will lecture on the research into the new drug candidate.

CRB researcher Åsa Grauman was awarded the Swedish Society for Risk Sciences' award to promising junior researchers 2022 for her doctoral thesis about the publics’ perspective on cardiovascular risk information. She gave an appreciated presentation of her work at the annual meeting of the Swedish Society for Risk Sciences, which is now available on YouTube.

Uppsala University’s Centre for Research Ethics & Bioethics is looking for a doctoral student in bioethics, focusing on nutrition and dietary advice. The position is within Uppsala University’s graduate programme in medical humanities. Application deadline 7 October! Swedish required.

María Pagnon de la Vega receives the prize for her thesis, Characterization of the novel “Uppsala mutation” causing a familial form of early onset Alzheimer’s disease, in which she describes how a newly discovered mutation causes early onset familial Alzheimer’s disease. The prize ceremony takes place at the annual meeting of Upsala Läkareförening on September 20.

The Hwasser prize was founded by Upsala Läkareförening to honour the memory of Israel Hwasser, one of Uppsala’s most famous medical scientists. The Hwasser prize foundation is based on a donation to Uppsala University in 1861 by the king Karl XV “to honour Professor Israel Hwasser’s excellent qualities as teacher and scientist”.

This year’s prize sum is 30 000 SEK.

Predatory journals are a problem in all academic fields. For several years now, the CRB Ethics Blog has published a list of where not to publish in bioethics. And now, the 2022 list is available! The list includes 50 journals which are potentially predatory or whose quality of publications would deem them unacceptable to publish in. The article also includes resources listing high quality bioethics journals, as well as links to guidelines on ways to identify that a journal might be predatory or questionable.