News from CRB

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.

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.

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.

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!

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.

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.

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.

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.

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.

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.

Our centre is a multidisciplinary research environment with a clear communications profile. We lead the communications work in several international research projects and run two research blogs. We are looking for a driven writer, who likes teamwork and appreciates high tempo. You will be working in projects, producing content for web, social media and newsletters, to fit different project channels. 

A disorder of consciousness is a state where consciousness has been affected by devastating damage to the brain. The diagnosis and health care of patients suffering from these disorders raise several clinical as well as ethical issues. And researchers are still looking for ways to solve them. Recent guidelines, European and American, offer important recommendations for improving both diagnosis and treatment for this patients group. But according to Michele Farisco and Arleen Salles, there is still some challenges to overcome. Ethical as well as practical.

Uppsala University’s Centre for Research Ethics & Bioethics is looking for a PhD student for a project on the ethical foundations for assessment of severity as a priority criterion in health care. Swedish required, apply before 22 April! 

Identifying and quantifying residual consciousness in patients with disorders of consciousness is notoriously challenging but increasingly urgent. There is a high rate of misdiagnosis among patients suffering from these disorders, particularly between vegetative states/unresponsive wakefulness syndrome and minimally conscious states. A recent BMC Medical Ethics publication explores how operational indicators previously introduced to assess consciousness in non-human animals and artificial intelligence can be relevant and have an ethical impact on the diagnosis and care of patients with disorders of consciousness. 

The AI ethics research field is growing rapidly. So is the number of guidelines issued to provide operational recommendations to manage the ethical issues raised by AI design, development and implementation. In a recent Neuroethics publication, Michele Farisco, Kathinka Evers and Arleen Salles suggest some of the applied issues covered by these guidelines can in fact be properly assessed only on the basis of a preliminary conceptual analysis. And that embracing neuroethical methodology can help tackle the practical ethical challenges of AI.

Breast cancer is the leading cause of cancer-related death among women worldwide. Early detection is key for successful treatment and researchers are now exploring how artificial intelligence (AI) can be used to interpret mammogram scans. As part of the newly launched project AICare, Uppsala University’s Centre for Research Ethics & Bioethics are using empirical research to support ethical discussion about using AI-based tools in the health care system. 

How someone understands an illness also affects their attitudes to taking preventive action. A recent study investigated how Swedes aged 40 to 70 perceive the cause of heart infarctions and their beliefs about how much they can influence their own personal risk. Results show a high level of awareness among the participants about the causal impact of risk factors such as obesity, hypertension, smoking, and lack of exercise, on heart disease. However, people having those risk factors were less convinced about the casual link between their own risk factor and having a heart attack.

On 1 February 2022, Niklas Juth joins the Department of Public Health & Carin Sciences and the Centre for Research Ethics & Bioethics in his new role as professor in medical ehics. With the ambition to vitalise research in clinical medical ethics.
 

The health care system is dealing with ethical dilemmas on a daily basis. Both in relation to diagnosis and treatment, and issues that concern access to care and health care organisation. Medical ethics is a priority for Uppsala University and Region Uppsala, who together have established a chair in Medical Ethics at the Department of Public Health and Caring Sciences. The new professor will also be involved in work at the Centre for Research Ethics & Bioethics. On 1 February 2022, the position will be filled by Niklas Juth, who will work together with the region and Faculty of medicine to develop our approaches to medical ethics.

The asymmetrical relationship between patients and health care professionals raises ethical concern: Bringing the ethics of nursing and care to the fore in health care settings. On 1 December 2021, Anna T. Höglund was promoted to Professor in Care Ethics and Gender Studies, strengthening our profile on clinical ethical issues.

Antibiotic resistance is a global threat to health and development. But the way we behave can either slow this process down or speed it up. Antibiotic resistance is a collective problem. It is also a shared responsibility. And it is not limited to medical antibiotic use. Whether it is choices made in the dairy aisle or by ensuring vaccinations are up-to-date before travelling, the effectiveness of our efforts to to curb antibiotic resistance will depend on our behaviour.

Resignation syndrome affects children and adolescents who seek asylum in Sweden. In a study of 13 children suffering from the condition, researchers found that those who were separated from the rest of their family recovered. Being issued a residence permit was not necessary for their recovery. The results of this study were published in European Child & Adolescent Psychiatry. 

Today an international public-private consortium of 35 partners announced the launch of Screen4Care – a research project that aims to significantly shorten the time required for rare disease diagnosis and efficient intervention by utilising genetic newborn screening and advanced analysis methods such as machine learning. The project will run for a period of five years with a total budget of EUR 25 million provided by the Innovative Medicines Initiative (IMI 2 JU), a joint undertaking of the European Union and the European Federation of Pharmaceutical Industries and Associations (EFPIA).

To support the occasion of the Global Ethics Day 2021 on Wednesday 20 October 2021, ENAI together with Uppsala University has organised European Academic Integrity Week 2021 (EAIW) which takes place from 18 October to 22 October 2021. European Academic Integrity Week 2021 will be celebrated in the same way as last year: With a series of lunch-time webinars, starting at 12:00 CEST, each lasting 90 minutes. There will be no webinar on Wednesday as this day will be free for your national or institutional activities. The webinars are free and everybody is welcome to register!

The Swedish public is becoming increasingly sedentary and are exercising less and less. At the same time, two million Swedes live with cardiovascular disease, which is the leading cause of death in Sweden. Still, the results from a study based on findings from the Swedish Cardiopulmonary Bioimage Study, or SCAPIS for short, show one in three underestimates their risk of developing cardiovascular disease. Research supported by the Swedish Heart Lung Foundation: Hjärt-Lungfonden.

Sweden's seven medical faculties in Sweden have agreed that their staff should take a course in research ethics. All new employees who do research or teach within the Disciplinary Domain of Medicine and Pharmacy that are employed for at least a year will take a course in research ethics during their first year at Uppsala university.

Parents of children with cancer sometimes look for information about clinical trials on the internet. We know very little about what they find. In a recent study, researchers from Uppsala University’s Centre for research ethics & bioethics analyse the content, quality and reliability of YouTube videos about such clinical trials. It turns out potential benefits are largely overrepresented. While risks are mentioned in passing or not at all. 

 A recent study shows 51% of researchers in the Netherlands are occasionally guilty of questionable research practices. Some by being insufficient as mentors or supervisors, others by only citing research that supports their own findings. 8% are guilty of misconduct, like fabricating or manipulating results. This is alarming, says Stefan Eriksson, Director of Uppsala University’s Centre for research ethics & bioethics.

The health care system, research projects, and authorities, as well as many companies, depend on people sharing their health data digitally. In a recent study, Jennifer Viberg Johansson and her co-authors examine under which circumstances people are willing to share such information. 

Any health care interventions should be made after careful consideration of the benefits and risks for the individual. But experts and the general public sometimes have different views on what the benefit actually is. By examining which groups benefit from health care efforts, they can be directed towards particularly vulnerable groups and individuals. In a newly issued policy brief, Åsa Grauman reveals her recommendations for how best to inform the public about cardiovascular risk. 

We are looking for a full time researcher to investigate the preferences that parents and healthcare professionals have in relation to screening and genetic testing of newborns. This is a full time position for two years, based at the centre, but working in an international research project. Application deadline 19 July 2021. 

Patients want to have a say in decisions that affect their health. But decision-makers have not had the tools to listen. Patient preference studies offers just that: a tool for decision-makers to collect, and for patients to give, representative and well-informed input. Karin Schölin Bywall’s dissertation reveals when and how including patient preferences in regulatory decision-making.

One in three underestimate their own risk of cardiovascular disease. Many are good at understanding risks and risk factors when they pertain to other people. A recent study reveals that when it comes to our own risk, many of us appear to have a blind spot. In an interview, Åsa Grauman reveals how this finding could help improve risk communication in health care. 

We are looking for a postdoc researcher to work on an international project looking at parents' and health care professionals' preferences for screening and genetic testing for rare diseases in newborn children. And for attempting to identify patients by looking at the symptoms listed in their medical records using an algorithm. How this information is perceived will be explored using an instrument to measure Empowerment. Application deadline 12 July 2021!

In the shadow of the corona pandemic lurks the next global health crisis. Antibiotic resistance is one of the biggest threats to global health, food security, and development today and can affect anyone, of any age, in any country. Although antibiotic resistance is something that can happen regardless of what we do, unnecessary use of antibiotics is speeding up the process. On March 15, Mirko Ancillotti will defend his thesis. His research is an in-depth look at why we use antibiotics responsibly, why we sometimes do not, and what encourages us to do better. 

An interdisciplinary consortium of 22 partners will perform in-depth studies in three European cities to develop innovative, evidence-based policies to improve citizens’ quality of life addressing indoor and outdoor lighting. Our Deborah Mascalzoni will contribute her expertise in research ethics and bioethics. 

Medical ethics is an interdisciplinary subject of research and education that critically, analytically and empirically studies the ethical and moral aspects of biomedical research and clinical practice. Speak Swedish well enough to teach? We are looking for a new Professor of Medical Ethics to strenghten our clincal research profile. Application deadline 31 March 2020!

Neurotwin is a new 48-month EIC Pathfinder project initiated in January 2021 that will develop hybrid brain models able to represent the effects of non-invasive electrical brain stimulation appropriate in the context of large-scale connectivity alterations and oscillatory deficits that are characteristic to some of the brain disorders, such as Alzheimer’s disease. Uppsala University’s Centre for Research Ethics & Bioethics (CRB) leads the ethics and philosophy component of the project.

A new European research project prepares the ground for structural changes to promote gender equality in public and private research organisations. Led by the University of Turin, the four-year MINDtheGEPs project will identify good practice and help shape measures to reduce gender imbalances in seven research institutions and generate data to support the development of national and European policy for gender equality in research performing organisations. Uppsala University’s Centre for Research Ethics & Bioethics (CRB) contributes communications expertise, working together with Elsevier to support impact through communications and dissemination strategies for the project.