Risk of re-identification vs the need to identify individuals
There are risks associated with handling personal data in research. Unauthorised re-identification can cause harm. But there are clear benefits in terms of patient safety related to diagnosis and treatment if researchers are able to distinguish between individuals by identification.
De-identification or coding might not be sufficient for protecting the people who donate their samples and data against privacy invasions and breaches of confidentiality. But medical research, and especially rare disease research, needs to be able to identify individual patients to get results. According to a paper in EJHG, it is up to the research community to show they are up to the task of managing these risks and deserve the trust of the people whose data they are using.
The authors suggest open and transparent information and consent processes and using safe and unique personal identifiers, for example the GUID or HD. Mats G. Hansson is one of the authors. He says that researchers need to be careful not to promise too much when they describe data protection. He believes we need high professional standards and that researchers need training in research ethics, especially in the beginning of their career.
In most cases, using personal data in research produces benefits that far outweigh the risks. The authors suggest that an adequately informed consent contributes to responsible data sharing. But they also claim that broad consent is compatible with ethical access to data, sharing and use. And, they claim, so is no consent: given that the justification is ethical and the use is lawful, and the data processing is up to demonstrably high standards of governance.
But for this to work, there needs to be structures in place. We need ethical, legal and regulatory frameworks that recognise the need for unique identifiers that can handle complex and international data collection and sharing. Research projects also need governance structures that reflect the patient and publics’ perspective. The authors write that to ensure that researchers are aware of societal concerns, it is important to have an ongoing dialogue with patients and the public. That includes communicating what research is, what the risks are, and how people can benefit from the results.
More news from CRB
Inconsistencies in the treatment of disorders of consciousness: 200+ professionals surveyed
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 ethical perspectives on medical research involving children
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.
Relational effects should not be considered in health care priority setting
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.
Promoting responsibility by involving children in ethical discussion on vaccination
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.
Ethical considerations in whole genome sequencing
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.
Navigating the challenges of recruiting children with cancer for research
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.
Looking for lecturer: Ethics of care
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!
Broadening the debate on neurorights
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.
Open call to discuss the learning outcomes for medical ethics in the new Swedish medicine programme
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.
Differences in health literacy and digital health information‑seeking behaviour among Swedes
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 receives Fellowship to study how people view risk for cancer
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.
The public’s perspective on cardiovascular risk information
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.
We’re looking for a PhD student in bioethics for a project on dietary advice and nutrition!
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.
New list of 50 questionable bioethics journals
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.
Are you our new communications officer?
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.
Responsibility key to implementing guidelines for treating disorders of consciousness
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.
We’re hiring! Looking for a PhD student in medical ethics
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!
Indicators and criteria of consciousness for behaviourally unresponsive patients
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 neuroethics contribution to AI ethics and regulation
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.
Empirical ethics to explore the acceptability of AI in healthcare
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.
Being at risk for heart disease affects perceived importance of own risk factors
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.
New professor "I want to vitalise research in clinical medical ethics"
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.
Niklas Juth new chair in Medical Ethics at Uppsala University & Region Uppsala
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.
Anna T. Höglund new professor in Care 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.
Policy brief on fighting antibiotic resistance
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.
Scientific evidence for treatment of resignation syndrome
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.
Screen4Care: Accelerating Diagnosis for Rare Disease Patients Through Genetic Newborn Screening & AI
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).
European Academic Integrity Week 2021
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!
Many underestimate their own risk of cardiovascular disease
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.
7 medical faculties agree on compulsory research ethics course
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.
YouTube videos about clinical trials for children with cancer fall short
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.
51 percent of researchers sometimes cheat
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.
When are we willing to share our health data?
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.
Policy brief: Informing the public about cardiovascular risk
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.
Full time position to look at preferences for newborn genetic screening
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.
Bringing patients' views into medical approvals
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 risk of heart infarction
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.
Looking for new preference studies postdoc!
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!
Do educational tools influence what patients prefer?
Stakeholders across the medical product life cycle are eager to find out what patients prefer. From the pharmaceutical companies that develop new treatments, to the authorities that decide if they should become available to patients, and at what price. But to be useful in decision-making, the patient preferences collected need to be informed. A recent Patient Education and Counseling publication explores the use of educational tools in patient preference studies, and finds that sometimes, they influence patients’ preferences.
Fighting antibiotic resistance: We can do better!
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.
Launch of EU Research Project “ENLIGHTENme”: Exploring the Impact of Urban Lighting on Health and Wellbeing
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.
Are you our new Professor of Medical Ethics?
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: New European project proposes a novel therapy for Alzheimer’s disease
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.
No data, no policy: New project promotes gender equality action in seven European research institutions
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.
Season's Greetings from CRB
2020 was not what we expected. We are happy to have contributed expertise and skill to inform the discussion on vaccines and ethical guidance for intensive care. Now we look forward to new projects, new publications, new collaborations and a happy new 2021!! Want to stay connected? Follow our work on the Ethics Blog!
Pandemic – decision-making, communication & vaccination: See you at Smer’s ethics day 2020!
Ethical dilemmas are part of preparing for pandemics, and part of fighting contagion. The Swedish National Council on Medical Ethic’s (Smer) Ethics Day 2020 will consist of three webinars, all focusing on pandemics. Our Jessica Nihlén Fahlquist will participate in a panel discussion on vaccines against Covid-19.
Ethical, social and psychological impacts of genomic risk communication
Biomedical research is constantly finding new ways to detect genetic variation and link the findings to diseases and to the effects of various drug treatments. The amount of information that it produces keeps increasing, but we are still not sure how to manage it. Researchers who took part in the six-year Mind the Risk project coordinated from the Centre for Research Ethics & Bioethics have published their findings in an anthology focussed on genetic risk communication.
Academic integrity series for European Academic Integrity Week
We are hosting four lunch webinars in association with European Network for Academic Integrity during European Academic Integrity Week, 19-23 October. One for each day of the week except Wednesday the 21st, Global Ethics Day, when we are encouraging everyone to organise events at their home organisations.
New way to tailor treatment of acute myologic leukaemia
Using biomedical analyses, a new algorithm and integrating patient preferences, researchers in Italy, Spain, France, Germany, Finland, and Sweden will spend 3 years developing new treatments for acute myologic leukaemia, a cancer type of cancer where personalised treatment has not previously been available.
Culturally shaping developing minds
Are we socially steering evolution by influencing the cultural imprints to be stored in our brains? Recent neuroscientific findings would say so. In a recent paper, Kathinka Evers discusses the potential of being ‘epigenetically proactive’ and adapting our social structures to benefit brain development.