More news from CRB

Inconsistencies in the treatment of disorders of consciousness: 200+ professionals surveyed

Tue, 26 Sep 2023 13:28:00 GMT

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

Tue, 15 Aug 2023 09:30:00 GMT

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

Wed, 21 Jun 2023 11:21:00 GMT

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

Thu, 08 Jun 2023 06:56:00 GMT

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

Fri, 12 May 2023 11:56:00 GMT

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

Thu, 27 Apr 2023 11:39:00 GMT

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

Tue, 07 Mar 2023 09:47:00 GMT

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

Mon, 13 Feb 2023 13:41:00 GMT

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

Wed, 01 Feb 2023 16:49:00 GMT

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

Tue, 13 Dec 2022 12:52:00 GMT

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

Tue, 22 Nov 2022 08:44:00 GMT

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

Thu, 06 Oct 2022 06:00:00 GMT

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!

Tue, 20 Sep 2022 13:30:00 GMT

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

Wed, 24 Aug 2022 11:11:00 GMT

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?

Tue, 19 Apr 2022 13:50:00 GMT

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

Tue, 19 Apr 2022 08:41:00 GMT

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

Fri, 01 Apr 2022 11:46:00 GMT

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

Wed, 23 Mar 2022 14:31:00 GMT

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

Mon, 21 Feb 2022 08:46:00 GMT

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

Thu, 17 Feb 2022 07:43:00 GMT

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

Mon, 07 Feb 2022 12:26:00 GMT

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"

Mon, 31 Jan 2022 07:26:00 GMT

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.

Anna T. Höglund new professor in Care Ethics

Wed, 01 Dec 2021 06:16:00 GMT

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.

Niklas Juth new chair in Medical Ethics at Uppsala University & Region Uppsala

Mon, 06 Dec 2021 06:35:00 GMT

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.

Policy brief on fighting antibiotic resistance

Fri, 19 Nov 2021 14:23:00 GMT

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

Thu, 21 Oct 2021 06:16:00 GMT

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

Tue, 19 Oct 2021 08:03:00 GMT

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

Thu, 07 Oct 2021 06:36:00 GMT

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

Fri, 24 Sep 2021 06:36:00 GMT

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

Thu, 16 Sep 2021 11:58:00 GMT

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

Tue, 14 Sep 2021 06:25:00 GMT

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

Fri, 03 Sep 2021 08:38:00 GMT

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?

Tue, 06 Jul 2021 08:12:00 GMT

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

Tue, 22 Jun 2021 10:18:00 GMT

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

Fri, 11 Jun 2021 10:38:00 GMT

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

Wed, 12 May 2021 11:15:00 GMT

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

Mon, 19 Apr 2021 06:45:00 GMT

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!

Wed, 14 Apr 2021 07:52:00 GMT

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?

Wed, 24 Mar 2021 08:54:00 GMT

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!

Mon, 15 Mar 2021 08:30:00 GMT

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.

Are you our new Professor of Medical Ethics?

Wed, 03 Mar 2021 07:05:00 GMT

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!

Launch of EU Research Project “ENLIGHTENme”: Exploring the Impact of Urban Lighting on Health and Wellbeing

Thu, 04 Mar 2021 07:36:00 GMT

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.

Neurotwin: New European project proposes a novel therapy for Alzheimer’s disease

Tue, 23 Feb 2021 08:58:00 GMT

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

Mon, 01 Feb 2021 07:51:00 GMT

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

Fri, 18 Dec 2020 14:23:00 GMT

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!

Fri, 04 Dec 2020 07:45:00 GMT

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

Tue, 06 Oct 2020 13:08:00 GMT

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

Tue, 06 Oct 2020 09:46:00 GMT

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

Tue, 29 Sep 2020 09:00:00 GMT

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.

Corona vaccine(s) should not be a race to the finish line

Tue, 22 Sep 2020 06:55:00 GMT

A brand new virus, the first pandemic in modern time, and in January or February 2021, we are expecting vaccine approvals. It has been a year, but is that enough? What might the consequences be of this race to the finish line? Jessica Nihlén Fahlquist, associate professor and lecturer at Uppsala University’s Centre for Research Ethics & Bioethics, spoke to Radio Sweden and raised her concerns about a race to the finish line.

Culturally shaping developing minds

Tue, 29 Sep 2020 06:42:00 GMT

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.

Space, time: bridging the epistemic gap of brain & mind

Wed, 23 Sep 2020 08:41:00 GMT

How do we become ourselves? How does neuronal activity turn into consciousness and the self? One of nature’s great scientific mysteries is the ‘common currency’ of brain and mind. Georg Northoff, Soren Wainio-Theberge and Kathinka Evers suggest looking for a ‘Spatiotemporal Neuroscience’ to dissolve the brain-mind puzzle.

Genomic data sharing requires public trust

Fri, 18 Sep 2020 06:36:00 GMT

Genomics research relies on the ability for clinicians, and researchers to share genetic data with each other across the world. The largest ever survey on global public attitudes towards genomic research and data sharing was just published in American Journal of Human Genetics. Lack of trust in who data is shared with could significantly hinder genomic research. With less than half of the respondents saying they would be happy for their genetic information to be shared for more than one purpose, the results send a call to action for the genomic research community to build public trust.

Russian vaccine development raises important questions about transparency and trust

Fri, 14 Aug 2020 08:52:00 GMT

The Russian Covid-19 vaccine and the lack of transparency of the research about it could have a negative impact on the public’s perception of vaccines, and their trust in government authorities. But it also raises other important questions, such as how we should deal with research from less democratic countries?

Working and living during the Covid-19 crisis: recommendations from the Human Brain Project

Wed, 24 Jun 2020 07:07:00 GMT

The Covid-19 pandemic has changed the wat we work and live, moving much of it online. But how do we make sure that digital works is successful, and becomes a valuable experience? In a recent issue of the Journal of Responsible Technology, the Human Brain Project’s Karin Grasenick and Manuel Guerrero writes about responsible research and innovation and digital inclusiveness during the Covid-19 crisis and the I-Include initiative.

Ethical choices in a pandemic

Thu, 14 May 2020 07:52:00 GMT

During the coronavirus pandemic, many ethical questions come to the fore. How should care services prioritise among severely ill patients? And how far should the rights of individuals be restricted? There are various ethical perspectives, think Anna T Höglund and Jessica Nihlén Fahlquist, researchers at the Centre for Research Ethics and Bioethics (CRB) in Uppsala.

Cancer treatment no better in clinical trials

Tue, 12 May 2020 09:21:00 GMT

Many belive cancer patients who take part in clinical trials receive better treatment than others. A recent study from researchers at Uppsala University, published in BMC Cancer, pokes a hole in that theory. The authors, concluding that there is no quality evidence to support the idea that patients who participate in clinical trials have better outcomes.

What demands can we place on physicians during the COVID-crisis?

Tue, 05 May 2020 10:55:00 GMT

Physicians have a responsibility to protect patients’ autonomy, do no harm, to do good and to divide resources fairly. But how these ethical principles are interpreted in practice can differ from physician to physicians. For whom are they supposed to do good, for example? For the patient, a patient group or society as a whole? With limited resources and large demand, these questions are more crucial than ever. And different interpretation can create conflict.

Research podcast on ethical crossroads in a pandemic

Tue, 07 Apr 2020 14:20:00 GMT

The corona pandemic brings a lot of ethical issues to the fore. For example about priorities in the health care system, or limiting individual's rights to protect those that are vulnerable. Episode 47 of Uppsala University’s' "Forskarpodden" talks about public health ethics with CRB's Anna T. Höglund and Jessica Nihlén Fahlquist (in Swedish).

What should we eat? An ethical framework for well-grounded food choices

Fri, 06 Mar 2020 09:58:00 GMT

Being an ethically aware consumer today is difficult. Partly because there are so many aspects to take into account, and partly because it is difficult to find trustworthy and reliable information to base your food choices on. But that does not mean there is no point in thinking about what could constitute an ethical choice of food. Anna T. Höglund explores ethical food choices in a recent publication.

Swedish obstetric routines changed after criticized study: Too soon?

Tue, 03 Mar 2020 12:34:00 GMT

Decisions to induce prolonged pregnancies in week 41 instead of 42 were made in two Swedish healthcare regions as a result of the Swepis study. Now, the study is facing criticism. External researchers are critical to conclusions drawn by the authors and that clinical routines have changed before the study has been reviewed in its entirety.

Governance and ethics of health care in focus

Fri, 10 Jan 2020 12:19:00 GMT

Governance and ethics was the theme at the Swedish National Council on Medical Ethics' Ethics Day 2019. Among the presenters was Anna T. Höglund, associate professor of ethics at the Centre for Research Ethics & Bioethics at Uppsala University. Together with Erika Falkenström, she presented on the subject of "Ethics in policy and governance: What ethical competence do health care decision-makers need?".

Connecting the brain and consciousness

Wed, 06 Nov 2019 15:17:00 GMT

What is consciousness? What does it mean to be ‘aware’, and how is our consciousness connected to the physical brain? A recent thesis from Uppsala University explores the philosophical aspects of the issue, and proposes a solution: the ‘intrinsic consciousness’ theory.

Egg donation for gene editing in embryos expose women to health risks

Tue, 05 Nov 2019 15:07:00 GMT

Current gene editing approaches allow for precise modification of DNA. These could potentially be used to correct disease-causing genes in human embryos.To evaluate the safety and efficacy of this approach, a large number of studies would be needed. To create embryos for this purpose, women have to donate eggs. In a recent Nature correspondence, CRB’s Emilia Niemiec and Heidi Howard draw attention to the health risks associated with egg donation in this context.

Choosing what's for dinner raises ethical questions

Wed, 16 Oct 2019 08:40:00 GMT

Anna T Höglund, associate professor at CRB, recently wrote a book on food ethics. These past few days, she has been visible in Swedish news coverage. Trying to answer the question of "What's for dinner?" is not always as easy as we would like it to be. Our choice of food impacts the environment, animal welfare and our health.

Cheating students: Swedish university teachers sometimes naïve

Wed, 18 Sep 2019 12:59:00 GMT

Swedish television have reported on a survey that shows Swedish students use commercial ghost writing services to a lesser extent than students in other countries. However, this might change as the number of courses offered in English are increasing. According to Sonja Bjelobaba, researcher at Uppsala University and associated to the Centre for Research Ethics & Bioethics (CRB), sometimes, Swedish teachers are naïve about these issues.

Future ethical standards for ICT, Big Data, AI and robotics

Thu, 11 Jul 2019 13:15:00 GMT

Policymakers struggle to assess the ethical, legal and human rights impacts of IT systems in research, industry, and at home. At the same time, research needs to be useful for industry, academia, and society to have impact on policy. The PANELFIT, SHERPA and SIENNA projects just published an editorial in Orbit to explain the projects collaborate and work together with stakeholders to improve ethical, human rights and legal frameworks for information and communication technologies (ICT), big data analytics, artificial intelligence (AI) and robotics.

Testing for hereditary (genetic) diseases before pregnancy raises ethical issues

Tue, 16 Apr 2019 09:02:00 GMT

Screening all or most couples for genetic disease before pregnancy could provide more options for couples who want to have children. But this would also threaten the core values of the Swedish health care system. Amal Matar gave an interview on the ethics of genetic screening before pregnancy, the subject of her dissertation, in Dagens Nyheter (DN), Sweden's largest morning newspaper.

Nurses and physicians have different views on DNR orders

Tue, 16 Apr 2019 07:55:00 GMT

Entering the room of a patient with cardiac arrest not knowing if there is a DNR order is something nurses don't want to experience. But this still happens. Ethical conflicts surroundings decisions not to resuscitate are common. Mona Pettersson spent 8 years researching DNR orders and in the process she interviewed both nurses and physicians.

Monitored by mom and dad

Fri, 29 Mar 2019 13:05:00 GMT

Jessica Nihlén Fahlquist, senior lecturer in biomedical ethics and researcher at Centre for Research Ethics & Bioethics, was interviewed for the Swedish Educational Broadcasting Company (Utbildningsradion, UR) about the ethics of parents monitoring their children via GPS.

What should we eat? New Swedish book on food and ethics

Fri, 29 Mar 2019 10:40:00 GMT

Anna T. Höglund, Associate Professor of Ethics, recently published a book in Swedish about food and ethics. According to her, asking the simple question "what should we eat?" raises questions relating to production and consumption of food. We are constantly reminded about the fact that the food we eat influences climate, how animals are taken care of, and the fact that what we eat has an influence on our health.

Research participants struggle to understand test results

Tue, 26 Mar 2019 07:28:00 GMT

Åsa Grauman, PhD student at the Centre for Research Ethics & Bioethics, asked people who participated in the large SCAPIS study how they perceived the test results they received after taking part in the project. They value the health screening, but identify shortcomings in the communication of test results.

Public awareness of antibiotic resistance

Tue, 12 Mar 2019 12:10:00 GMT

Antibiotic resistance is one of the biggest threats to global health, food security, and development today. Mirko Ancillotti's research focuses on the Swedish public's perception of this growing issue.

Should we be screening future parents for genetic disorders?

Fri, 01 Mar 2019 09:53:00 GMT

Should public health-care systems provide couples with expanded screening for genetic disorders before they decide to become pregnant? Screening programmes could increase our reproductive choices and autonomy. But there are ethical issues at stake.

HBP's Ethics Rapporteur Programme: Q&A with Manuel Guerrero

Mon, 25 Feb 2019 09:49:00 GMT

CRB’s Manuel Guerrero is task leader for the Human Brain Project’s Ethics Rapporteur Programme. Find out how this programme works to create communication links within the project to achieve and maintain the projects Responsible Research and Innovation goals.

Patients' perspectives on being included in medical product decision making

Wed, 16 Jan 2019 09:51:00 GMT

Including patient perspectives in medical product development and decision making is of increasing interest to patients themselves, physicians, authorities, and the pharmaceutical industry. Patient preference studies allows patients to influence decisions and drug development. CRB's Karin Schölin Bywall was interviewed on the subject by the Swedish Rheumatism Association.

Research - for better or for worse?

Fri, 14 Dec 2018 12:26:00 GMT

How do we ensure responsible research and research ethics? How do we minimize the risk of research results are used maliciously or fall into the wrong hands? And who is responsible for the results of research? The issue was discussed at FORMAS' breakfast seminar November 29th.

The complicated ethics of deciding not to resuscitate

Fri, 14 Dec 2018 11:05:00 GMT

If a patient is seriously ill, and would not be helped by CPR, there should be a well-documented decision not to resuscitate. But the decision is sometimes made too late, unclear, or not sufficiently communicated. And in the middle of this stands the nurse. Expected to quickly interpret the situation. In her thesis, Mona Pettersson describes the complicated ethics of DNR orders in hematolocy and oncology.

Including patients in decisions about drugs

Thu, 06 Dec 2018 12:28:00 GMT

Companies and authorities sometimes involve individual patients and patient representatives in their decisions. By using preference studies, we can find out what larger groups of patients think about drugs. And how they weigh the good and the bad against each other. But what do patients think about being included in these decisions?

Neuroscience of drug addiction highlights ethics and policy

Fri, 23 Nov 2018 10:53:00 GMT

A recently published paper on the neuroscience of drug addiction raises ethical and policy issues arising out of addiction. The paper concludes social and economic circumstances contribute towards the propensity of individuals to become addicted.

Deciding not to resuscitate: nurses’ and physicians’ perspectives

Thu, 15 Nov 2018 09:23:00 GMT

When deciding not to resuscitate patients in cardiac arrest, ethical issues arise. Nurses and physicians conflicting perspectives often cause frustration. In a new doctoral thesis from Uppsala University, Mona Pettersson examines clinical and ethical perspectives on “DNR orders” in cancer care.

Article on gene editing one of the most cited in European Journal of Human Genetics

Thu, 08 Nov 2018 10:33:00 GMT

A paper by CRB researcher Heidi C. Howard et al. on points and questions to consider for a responsible way forward for gene editing in humans is listed as one of the most cited and shared articles published in European Journal of Human Genetics between 2016-2017.

Cancer patients receive inadequate information

Wed, 03 Oct 2018 07:18:00 GMT

Cancer patients looking for online information about experimental clinical drug trials risk finding that is not only bad, but sometimes also wrong. Also on official websites that aim to inform about available trials. According to a recently published study from Uppsala University, this can lead to consequences for patients.

Ethical competence in DNR decisions

Tue, 10 Jul 2018 10:24:00 GMT

Decisions not to resuscitate are frequently made within hematology and oncology care. Nurses and doctors involved in the decision-making face ethical dilemmas. To act in the best interest of the patient, they need to trust their ethical judgements. To do that, they need ethical competence.

RRI & philosophy in the Human Brain Project

Tue, 03 Jul 2018 08:14:00 GMT

Scientific endeavors raise many ethical, legal and social questions. Responsible Research and Innovation (RRI) has become an important ethical and political theme for the European Commission. A recent publication from researchers in the Human Brain Project suggests that philosophical reflection could complement the RRI approach by providing ontological and epistemological perspectives on science.

Book release: "På spaning efter etik" on ethics & healthcare management

Wed, 13 Jun 2018 13:13:00 GMT

Politicians, officials and healthcare directors have a major influence on the health conditions and opportunities to work in practice. What is their view on their own responsibilities? And what ethical skills are needed for management of care at county council level?

Autonomous cars – how safe is safe enough?

Sun, 06 May 2018 09:50:00 GMT

Jessica Nihlén Fahlquist, Senior Lecturer in Medical Ethics at CRB, calls for ethical transparency of incident scenarios autonomous cars may face. She has immersed herself in ethical issues in relation to autonomous cars and artificial intelligence.

Where to publish and not to publish in bioethics

Fri, 04 May 2018 13:02:00 GMT

Allegedly, there are over 12.000 so called predatory journals out there. Now, Stefan Eriksson and Gert Helgesson present an updated list of where tp publis and not to publish in bioethcs.

A continuum of consciousness

Fri, 27 Apr 2018 12:30:00 GMT

There is a need for an overarching theory of consciousness in both science and philosophy. To build one, members of the CRB neuroethics and philosophy team suggest we should look at the brain as something more than an input-output machine. Instead, they propose focusing on its intrinsic activity.

Ethics and autonomous cars

Wed, 21 Mar 2018 14:03:00 GMT

A Volvo model Uber-taxi recently hit a woman in Arizona, US. The car was in autonomous mode. According to Jessica Nihlén Fahlquist, Senior Lecturer in Medical Ethics at CRB, this case highlights several of the ethical issues relating to self-driving cars.

Stefan Eriksson advisor for good research practice

Wed, 21 Feb 2018 11:38:00 GMT

Stefan Eriksson was recently appointed as the Vice-Chancellor’s advisor for good research practice. The position is new and entails advising the Vice-Chancellor and coordinating issues regarding good research practice at the university.

SIENNA: Preparing the ground for responsible innovation

Thu, 19 Oct 2017 10:00:00 GMT

Policy makers all over the world struggle to assess the ethical and human rights impact of new research in genetics and genomics, human enhancement, artificial intelligence and robotics. Researchers from four continents have teamed up in the SIENNA project to help improve existing ethical and legal frameworks. CRB is part of a consortium that receives a financial contribution of just under €4 million from the EU’s Horizon 2020 programme.

Moving away from anthropocentric views of personal identity

Thu, 31 Aug 2017 06:48:00 GMT

Personal identity is one of the more frequently discussed themes in bioethics. What does it take for people like us to survive and exist? The answers tend to focus either on the psychological aspects of personal identity, or biological facts: that we are essentially animals.

DEBATE: Who is responsible when technology decides for us?

Thu, 18 May 2017 07:56:00 GMT

Reflection is neccesary if technology is going to contribute to the good society. This is the message from Jessica Nihlén Fahlquist in NyTeknik this week.

James Giordano joins the CRB neuroethics team

Tue, 14 Mar 2017 08:53:00 GMT

We are happy to announce that Professor James Giordano will join the CRB neuroethics team later this year. He is also part of the Human Brain Project’s neuroethics and philosophy team where he is one of the task leaders.

We need to discuss the ethics of technology

Wed, 01 Mar 2017 14:20:00 GMT

Technology is developing rapidly. In a recent interview in Computer Sweden, Jessica Nihlén Fahlquist offers her view on the responsibility that engineers, developers and companies have, and the values technologies bring.

Ulrik Kihlbom Associate Professor of Medical Ethics

Wed, 01 Mar 2017 10:28:00 GMT

The disciplinary domain of medicine and pharmacy at Uppsala University recently appointed Ulrik Kihlbom Associate Professor of Medical Ethics.

New study on children’s rights in biomedicine

Tue, 24 Jan 2017 09:00:00 GMT

The Council of Europe’s Committee on Bioethics (DH-BIO) just published a report identifying areas in science and biomedicine that could affect children’s rights. The report is written by three medical lawyers from Uppsala University.

New research ethics training for supervisors

Tue, 20 Dec 2016 14:42:00 GMT

Why does research ethics matter? What do you need to know as a supervisor? The disciplinary domain of medicine and pharmacy at Uppsala University is launching a new course for all main supervisors.

Swedish radio about genetics, ethics and law

Thu, 10 Nov 2016 14:31:00 GMT

Today, Swedish Radio’s P1 programme ”Vetandets värld” talks about whether parents should be allowed to check their unborn children’s entire genome and other gene-ethical and legal issues. The panel consists of Jane Reichel, Professor of administrative law and Santa Slokenberga, doctor of medical law, both part of the CRB team, Richard Rosenquist Brandell, professor in clinical genetics at Uppsala University and Lisa Fogelberg from the breast cancer organisation Agatha.

Funding for ethical and legal aspects of stem cell research

Wed, 02 Nov 2016 09:55:00 GMT

Mats G. Hansson, Professor of Biomedical Ethics, has received a 2,100,000 SEK grant from the Swedish Research Council. The research will provide analysis of the ethical and legal aspects of using human embryonic stem cells to develop islets of insulin producing cells for patients with diabetes. The project will also develop guidance for clinical practice.

Giving patients a voice in drug development

Tue, 18 Oct 2016 08:27:00 GMT

The patient perspective is important in all medical research, and particularly in drug development. This month, a public private research initiative called PREFER, is launched to assess when and how patient preferences on benefits and risks should be incorporated in decisions on medicinal products.

Parent’s views on genetic screening before pregnancy

Mon, 17 Oct 2016 15:00:00 GMT

Technologies to screen for genetic carrier status have advanced in recent years. It is now possible to screen for several genetic disorders before pregnancy. But do future parents want to find out what disorders they might pass on to their children?

We need to discuss equity in health care

Tue, 04 Oct 2016 08:59:00 GMT

A group of researchers at the universities of Uppsala, Gävle and Mälardalen shows that we are still a long way from what Swedish Healthcare Act prescribes: Equity in health for the whole population.

Preconception genetic screening: What health care professionals think

Tue, 31 May 2016 12:25:00 GMT

Reproductive genetic screening is surrounded by discussion. The ethical debate revolves around reproductive autonomy, medicalization, discrimination and parental responsibility. A new study that examines the health care professional’s views on these issues in relation to the use of preconception expanded carrier screening (ECS) show they share the same concerns.

Age, education and health literacy affects understanding of risk

Thu, 19 May 2016 09:11:00 GMT

We know that people have difficulties interpreting risk information correctly. This is a challenge for researches who want to know how people weigh possible risks against benefits. A recent study shows that age, education and health literacy affect the ability to understand risks. This means researchers need to have strategies in place for accurately measuring preferences regarding risk.

New book on direct brain communication

Fri, 13 May 2016 08:31:00 GMT

Neuroscience offers exciting prospects for communication with infants and patients with brain disorders that reduce their consciousness. This possibility raises many questions. A new anthology offers a systematic assessment of philosophical, scientific, ethical, and legal issues that arise when neurotechnology is used to attempt this type of communication.

Help to choose good bioethics journals

Tue, 19 Apr 2016 08:32:00 GMT

There are allegedly over 8.000 predatory journals out there that serve their own economic interests instead of supporting readers and science. To help bioethicists choose where to publish, Stefan Eriksson and Gert Helgesson publish two lists on the Ethics Blog: ‘Where to publish’, and ‘Where not to publish’.

Debate: Macchiarini scandal - speech of grey-zone lacks foundation

Thu, 10 Mar 2016 13:25:00 GMT

After the scandal with experimental surgeries at Karolinska Institutet where surgeon Paolo Macchiarini used synthetic windpipes, there has been talk of grey-zones in Swedish legislation. Today, a number of Swedish ethics researchers publish a debate article claiming this is not true.

Play helps children with cancer

Mon, 07 Mar 2016 10:31:00 GMT

Children are a particularly vulnerable group in health care. Results from a pilot study shows that pretend play can help children with cancer communicate with doctors and nurses. CRB is about to start a three year project to find out if this method can help these children improve their quality of life and well-being.

Debate: Stand up for the equal value of all humans

Wed, 16 Sep 2015 12:08:00 GMT

It is important to know what the legal system has to say in times when strong forces are questioning the equal value of all humans. 19 lawyers, including Moa Kindström Dahlin and Anna Sara Lind from CRB, signed a debate article in Dagens Nyheter that says that these values: that freedom and dignity for all humans has to be respected, and that discrimination needs to be countered, are written in the Swedish constitution.

Interview with Kathinka Evers in 3:AM Magazine

Sun, 20 Dec 2015 12:54:00 GMT

3AM Magazine just published an interview with Kathinka Evers about what neuroethics is and what its questions are, the distinction between fundamental and applied neuroethics, the relationship between brain science and sociology, and about how her approach avoids both dualism and naive reductionism. The interview also discusses mind-reading, ethical issues arising from disorders in consciousness, brain simulation and its relation to philosophy and whether tendencies in the brain lead to social or individualistic interpretation, epigenesis, human enhancement, cognitive prosthetics and the singularity.

RADIO: Perceptive experts better at convincing vaccination skeptics

Fri, 06 Nov 2015 12:39:00 GMT

Authorities and the health care system need to become more humble and perceptive in their communication around side-effects of vaccination. That is the message from Jessica Nihlén Fahlquist in Swedish Radio’s weekly science programme that deals with POTS, a condition with palpitations, vertigo, fainting and pain that is suspected to be associated with HPV vaccination.

Debate: We need new ethical review legislation

Tue, 09 Feb 2016 10:30:00 GMT

According to Mats G. Hansson, the Macchiarini case puts the spotlight on the shortcomings of the Swedish system for ethical review.

Who calls Swedish Health Care Direct '1177'?

Tue, 13 Jan 2015 12:54:00 GMT

For some time now, all Swedish regions have been connected to the telenursing service Swedish Healthcare Direct (SHD), or ‘1177'. But does that mean we have equitable access to health care? Perhaps not. A recent study shows that both language and gender influences who uses the service.

Open MIND – philosophy, cognition and neuroscience

Thu, 22 Jan 2015 12:48:00 GMT

An open access collection of the latest work in philosophy, cognitive science and neuroscience is now available online. Kathinka Evers from the Centre for Research Ethics and Bioethics (CRB) is one of the authors.

Ethics lunches for scientists and engineers

Mon, 26 Jan 2015 12:45:00 GMT

This spring, the disciplinary domain for science and technology (TekNat), DRI (den reflekterande ingenjören) and UTN (Uppsala teknolog- och naturvetarkår) are hosting a series of lunch seminars focusing on ethics

What it is like to be an animal

Wed, 08 Apr 2015 11:43:00 GMT

It is one thing to say that humans are animals, but a different one to actually say "I am an animal". What happens to us when we make this realization about ourselves?

Whole genome sequencing of newborns

Thu, 23 Apr 2015 09:59:00 GMT

It is faster and cheaper than ever to sequence a person’s entire genome. Perhaps genomic information could be useful for health care? Then it might be a good idea to sequence the whole population just after birth. Or is it?

Contrasts between animals and humans

Mon, 27 Apr 2015 09:44:00 GMT

Philosophers often use the contrast between animals and humans as a rhetorical figure. It is easy to assume that this is because they are anthropocentric. But is this really why?

Families need care when children are dying

Mon, 21 Sep 2015 09:29:00 GMT

Children with cancer want honest but hopeful information. But giving appropriate information is difficult and improvements are needed for the sake of the child, the siblings and the parents. In a dissertation from Uppsala University, Li Jalmsell stresses the need for a family perspective and involvement at the end of the child’s life.

Patients don’t understand the purpose of clinical drug trials

Mon, 17 Aug 2015 09:19:00 GMT

Clinical trials are an important part of cancer research. Future patients depend on the severely ill to test drugs to improve treatment. But in her dissertation from Uppsala University, Tove Godskesen shows that some of these patients have a limited understanding of the purpose of the studies they enroll in.

Bioethics scholars recommend broad consent

Thu, 27 Aug 2015 11:23:00 GMT

Researchers ask for different types of consent when they collect samples for future research. This creates confusion about what research is permitted. But it also causes unintentional constraints on future research and sometimes leads research proceeding without consent.

Funding for caring science

Fri, 26 Jun 2015 12:37:00 GMT

The disciplinary domain for medicine and pharmacy have awarded Anna T. Höglund 200 000 SEK to continue Mona Pettersson's PhD project on DNR-orders (Do Not Resuscitate) in oncology care.

First European biobank for research on breast milk and medicines

Wed, 05 Jun 2019 07:15:00 GMT

A new large European research project will fill the knowledge gaps when it comes to medical treatments of pregnant and nursing women. To be able to evaluate the effects of drugs during pregnancy and breast feeding, Uppsala biobank will collect and store breast milk and blood samples form pregnant and nursing women currently under medical treatment. The samples will be collected from women around Europe. In addition, the drug analysis platform UDOPP at the SciLifeLab’s Uppsala site will develop methods and technology to analyze drug residues in milk and blood.

Biobank Sweden launches ELSI Helpdesk

Mon, 29 Oct 2018 09:10:00 GMT

The Swedish Research Council-funded research infrastructure Biobank Sweden supports healthcare providers and universities with medical faculties working towards national harmonization in biobanking.

Genetic risk: Should researchers let people know?

Mon, 24 Sep 2018 08:30:00 GMT

Should researchers inform research participants, if they discover genetic disease risks in the participants? Yes, many would say, if the information is helpful to the participants. However, the value of complex genetic risk information for individuals is uncertain. In a PhD thesis from Uppsala University, Jennifer Viberg Johansson suggests that this uncertainty needs to be acknowledged by both geneticists and ethicists.

Transferring biobank research data between the EU and African countries

Thu, 23 Aug 2018 07:14:00 GMT

Despite the fact that the European General Data Protection Regulation (GDPR) provides ways to transfer data, it is difficult to find ways to share data between Europe and Africa. The feasible routes rely on EU enforcement. This means the possibilities for oversight are limited, leading to considerable data privacy risks.

Looking for legal project coordinator

Tue, 19 Dec 2017 09:24:00 GMT

We are looking for a legal project coordinator for the Swedish ELSI-helpdesk that will provide service for researchers connected to the Swedish research infrastructure Biobank Sweden. Apply by February 20, 2018.

Likelihood not always informative when making sense of genetic risk

Thu, 23 Nov 2017 19:11:00 GMT

The likelihood of disease is not always informative to research participants. The numeric sense of genetic risk does not always correspond to their understanding of risk information. Instead, research participants tend to understand genetic risk as a binary concept: you either are at risk, or you are not.

Report from Uppsala workshop on Public Private Partnerships

Wed, 04 Oct 2017 07:20:00 GMT

The focus on Public Private Partnership (PPP) emerged as PPPs are strongly endorsed as a model by EU grant funding schemes. The stakeholders workshop Ethically and legally sustainable partnership between industry and public funded research initiatives: PPP and Rare diseases as a case study took place at Uppsala University, organized by the Centre for Research Ethics & Bioethics (CRB), RD-Connect and the COST Action CHIP ME on 7-8 November 2016. A wide range of Stakeholders took part to the event creating a very interesting and challenging discussion from different perspectives.

New Swedish legal officer in the BBMRI-ERIC ELSI helpdesk

Fri, 03 Mar 2017 07:56:00 GMT

From February 1 2017, LL.D. Santa Slokenberga is taking over Moa Kindström Dahlin’s obligations at the BBMRI-ERIC ELSI Common Service.

B3Africa: first 18 months

Fri, 03 Mar 2017 16:55:00 GMT

In its first 18 months, B3Africa has taken two essential steps: the development of a technical solution for biobank research, and the design of a culture sensitive ethical and legal framework to ensure the rights of the sample donors are safeguarded.

A new Swedish legal framework for handling alleged misconduct

Mon, 06 Mar 2017 07:36:00 GMT

Recently, a Swedish Government Inquiry proposed a new legal framework for handling and investigating research misconduct. A new act is suggested to enter into force on 1st of January 2019. Here, Anna-Sara Lind presents the main novelties in the proposal.

Stem cells: a new type of biobank material?

Mon, 06 Mar 2017 07:54:00 GMT

Stem cells are perhaps not what first springs to mind as biobank material. Yet, even stem cells can be biobank material and there are biobanks that focus on stem cells. The use of this biobank material, however, has some unique features.

Swedish research data inquiry on exceptions

Tue, 13 Dec 2016 16:54:00 GMT

The Swedish Government has decided to commission a Research Data Inquiry to review regulations regarding the processing of personal data for research. The reference group includes three researchers from CRB: Mats G. Hansson, Anna-Sara Lind and Jane Reichel.

New research on cyber governance of health data

Fri, 09 Dec 2016 13:16:00 GMT

Digital technology creates both a chance and a pressure to use health data for research and commercial purposes. But this emerging ‘health cyberspace’ needs to be handled in a way that meets our social expectations on governance, security and privacy. And at the same time allows data to be used in ways that are beneficial to society. This is what a project supported by Nordforsk is setting out to do.

Legal aspects of direct-to-consumer genetic testing

Wed, 07 Dec 2016 08:54:00 GMT

Regulating health services is challenging because of the multitude of legal questions it raises. Not only do they relate to the quality of the service and protection of its users, but also to the competence and authority of actors involved. Here Santa Slokenberga, LLD, offers insights from her research on regulating direct-to-consumer genetic testing at the European level.

Managing data protection in practice – Swedish perspectives

Mon, 26 Sep 2016 07:27:00 GMT

The legislative process regarding the General Data Protection Regulation (GDPR) is closed within the European Union as the Regulation was decided in April this year. The activity at the Government Offices of Sweden has, however, not ceased. Here, Anna-Sara Lind gives us her view on the consequences for Sweden.

Informed consent guidelines listed among IRDiRC Recognized Resources

Thu, 22 Sep 2016 11:34:00 GMT

We are pleased to announce that a set of guidelines for informed consent in international collaborative rare disease research developed within the RD-Connect framework has received the IRDiRC Recognized Resources” label.

Public-private research partnerships: Workshop

Fri, 23 Sep 2016 08:56:00 GMT

In recent years, universities have done a lot of work to promote research partnerships with industry. Medical schools are encouraging their research faculties to pursue entrepreneurial strategies (start ups) to start companies and partnerships with industry. Together with RD-Connect and CHIPme, we invite you to discuss these issues in a two day workshop looking at current practices for public private collaborations and especially initiatives on rare diseases on November 7-8 this year.

ELSI Helpdesk: What does it do?

Thu, 22 Sep 2016 08:43:00 GMT

The organisation of the ELSI Helpdesk is coordinated by the Swedish node. It gathers input from various sources and collaboration is ensured with other ELSI experts from the national nodes from the BBMRI-ERIC member states. LL.D. Moa Kindström Dahlin is the Chief Responsible Officer. Here, she offers her thoughts on the process of setting up a federated Helpdesk.

Data Protection Regulation: final result

Mon, 20 Jun 2016 11:10:00 GMT

Anna-Sara Lind gives us an update on the what the final results of the negotiations for a general data protection regulation in the European Union.

Risk of re-identification vs the need to identify individuals

Tue, 14 Jun 2016 11:05:00 GMT

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.

It is your DNA, you should have a say

Fri, 27 May 2016 09:33:00 GMT

Genetic research depends on people donating their samples, allowing their genetic data to travel the world to be compared to data from other individuals. The policy that governs this process needs to be informed by what people really think. To find out, a unique research project is launching an online survey, YourDNAYourSay, to explore global public attitudes and beliefs around sharing genetic information.

Feedback of individual genetic results in Europe still not feasible

Mon, 09 May 2016 12:25:00 GMT

When it comes to genetic research, there is a growing consensus that research participants could be offered their individual results. Provided that they are scientifically robust, analytically valid and there is some clinical action people can take to prevent disease. Despite this, it is not common practice to do this in European genetic research. The reasons are many, one being the lack of legal frameworks, guidelines and resources to support feedback processes in research.

Call for ELSI experts

Wed, 04 May 2016 13:35:00 GMT

The BBMRI-ERIC ELSI Common Service relies on input from experts. They are now calling for your expertise!

EU-US Privacy Shield to once again ensure safe harbours for data transfers

Tue, 15 Mar 2016 13:58:00 GMT

The annulled Safe Harbour agreement puts research collaborations in a peculiar position. Here, Jane Reichel, Professor of Administrative Law, gives an update on the negotiations.

Effective consent for effective research

Mon, 14 Mar 2016 12:29:00 GMT

New sequencing techniques and the increasing sharing of data in international research consortia challenges the informed consent process, adding complexities that need to be co-ordinated. Rare diseases challege informed consent procedures.

Direct-to-consumer genetic testing companies lack clear consent processes for biobanking and research

Mon, 14 Mar 2016 10:28:00 GMT

Whole genome and exome sequencing are becoming cheaper and more available. High throughput techniques are no longer for research only. Today, both patients and consumers can have their genome sequenced. But the information consumers receive about this is often inadequate and could undermine the validity of the consent process.

ELSI: Inter-connecting legal frameworks, ethical and social issues

Wed, 09 Dec 2015 10:06:00 GMT

BBMRI-ERIC is a joint European platform for biobanking where ELSI service is considered a key asset. Moa Kindström Dahlin, doctor of public law, is the legal expert in the Uppsala team. Here she offers an update.

Unsafe harbours for researchers

Wed, 09 Dec 2015 10:02:00 GMT

There are many research projects in Europe that have safe harbour as a legal ground for sharing data between the EU and the US. These projects could now be in a peculiar situation as a judgment from the Court of Justice of the European Union concludes that Safe Harbour is not anymore a legally valid ground for sharing data between countries in the EU and the US.

How people value risk information

Wed, 09 Dec 2015 10:00:00 GMT

The Swedish SCAPIS study will identify individual risk factors for heart and lung disease. But how do research participants and patients perceive risk? And what do they want to know? Right now, two doctoral students are looking at people's preferences and perceptions.

What can ERIC do for biobanking?

Wed, 21 May 2014 09:39:00 GMT

What can the EU research governance tool ERIC do for biobanking? The answer to that can be found in the European Journal of Human Genetics where Jane Reichel, Anna-Sara Lind and Mats G. Hansson from CRB provides an analysis together with Jan-Eric Litton from BBMRI-ERIC.

Data protection update – A word on the legislative process

Mon, 28 Apr 2014 09:16:00 GMT

On March 12, the European Parliament accepted the Data Protection regulation. When it comes to EU regulation, this is only the beginning of the process. Anna-Sara Lind, Associate Professor of Public Law, gives us her word on the legislative process.

Trust takes more than guidelines and review

Fri, 25 Apr 2014 09:14:00 GMT

Research ethics has developed into an extra legal regulatory system. Guidelines serve as steering documents, committees oversee and consent procedures are formal.

New law for Biobank researchers

Fri, 25 Apr 2014 09:13:00 GMT

The decision taken by the Swedish Data Inspection Board to stop the Life Gene research project was the point of departure for a lively nationwide debate on the legal criteria for biobank research projects in Sweden. The Data Inspection Board based its decision on the fact that Life Gene’s research purpose was not specific enough: This made it incompatible with the requirements of both the EU Data protection directive and the Swedish Personal Data Act.

Dealing with genetic risk information

Mon, 28 Apr 2014 08:55:00 GMT

How do we evaluate and handle genetic risk information? For the coming six years, the Centre for Research Ethics & Bioethics (CRB) will co-ordinate an international research project to support health care, patients and decision makers.

The principles for sharing

Tue, 23 Sep 2014 08:49:00 GMT

To improve health care and validate research, we need to provide easier access to samples and data: Access that at the same time is ethical. This is the guiding principle in a new charter for sharing of biospecimens and data published by an international group of researchers in the European Journal of Human Genetics.

New law for research databases?

Fri, 12 Sep 2014 08:48:00 GMT

The Swedish Government considers national registries a unique and important resource. But the legal situation for these registries is unclear and could stand in the way of research.

LifeGene: Case closed?

Mon, 15 Sep 2014 08:47:00 GMT

The LifeGene project has been heavily discussed among biobank researchers in the last couple of years. The project gave rise to a number of both scientific and legal matters.

ELSI common service for BBMRI-ERIC

Mon, 15 Sep 2014 08:43:00 GMT

BBMRI-ERIC is a platform for long term research collaborations between EU countries. Within the platform, groups can develop standards for technical, legal and ethical purposes and set up criteria for biobanks. It could also offer new possibilities for researchers to communicate with policymakers.

Guideline for sharing specimens and data receives IRDiRC recommendation

Mon, 28 Sep 2015 08:08:00 GMT

The International Charter of principles for sharing bio-specimens and data has received a recommendation from the International Rare Diseases Research Consortium IRDiRC.

Renewed European effort to agree on data protection

Mon, 28 Sep 2015 08:06:00 GMT

The European Data Protection Regulation keeps moving through the administrative and legislative process. This summer, The Council, The European Parliament and the European Commission started the 'trilogue' negotiations. Here, Anna-Sara Lind gives her comments on the process.

Global research infrastructure for biobanking

Sun, 27 Sep 2015 08:03:00 GMT

The University of the Western Cape in South Africa just hosted the first meeting of B3Africa – a Horizon2020 CSA Action to bridge European and African biobanking and biomedical research.

Bioethicists suggest broad consent for biobank research

Mon, 28 Sep 2015 07:57:00 GMT

It is still unclear what kind of consent should be used when collecting biological samples for future research. Different forms of consent are practiced. This creates another uncertainty: which research is actually permitted with the collected samples?

Regulating biobank research: new book

Tue, 24 Feb 2015 11:03:00 GMT

Biobank research and genomic information are changing the way we look at health and medicine. So how can we regulate it? A recent book published by Springer shows us how the regulatory systems work and raises a critical voice.

Research ethics for medicine and the life sciences

Tue, 24 Feb 2015 11:01:00 GMT

Research ethics and research integrity is not just following regulation. Researchers
need the ability to identify ethical aspects in their own research. And to do something about them.

Swedish research database legislation: update

Tue, 02 Jun 2015 09:35:00 GMT

Research databases like the Swedish Life Gene project have proven problematic and the Swedish Government has tried to find solutions for collections of samples and data for 'future research', a purpose that is not considered specific enough by the Data Inspection Board.

Information and law in transition

Tue, 02 Jun 2015 09:32:00 GMT

New information and communication technologies have created exciting new possibilities for connecting individuals across borders and continents but also significant legal, ethical and political concerns.

Genetic risk: people might not know if they want to know

Mon, 15 Jun 2015 11:28:00 GMT

Biobank studies and genetic research aim at finding out the relationship between our genetic code and our diseases. Sometimes researchers find unexpected information about a participant. Asking people if they want this kind of risk information returned to them seems like a good idea. But is it fair to leave them to make that decision?

Trust based consent looks promising

Tue, 02 Jun 2015 11:25:00 GMT

Finding a model for informed consent that protects the integrity and interests of participants, future patients and researchers isn't easy. Recently, a group in Milano tested a trust based consent that I think looks promising.