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Centre for Research Ethics & Bioethics (CRB)

News archive


Biobanking for rare diseases

[2014-12-17] Rare diseases are uncommon, and often severe, disabling and life threatening. There is a need for research to help these patients get treatment.

Mats G. HanssonBut what are the current trends in biobanking for rare diseases? Mats G. Hansson is part of group of researchers that recently published a review on the current trends in biobanking for rare diseases in the Journal of Biorepository Science for Applied Medicine

Here is a video of what Hugh JS Dawkins and Caroline Graham, two of the authors from the Office of Population Health Genomics, Western Australian Department of Health, have to say about the article:


New book thinks about ethics

[2014-12-16] Why would a cancer patient agree to test a drug that might not be effective on their own disease? And are researchers responsible if their research can be used to develop biological weapons? A new book provides some food for thought.

Pär SegerdahlJust the other day, Pär Segerdahl published a book called Thinking about ethics with a collection of texts and reflections from the Ethics Blog. The texts might not provide the answers to all the questions posed above, but they should at least give you some ideas.

In the book, Pär Segerdahl invites you on a journey through some of the issues that the Ethics Blog has dealt with in the recent years.


Ethical rounds in psychiatric care

[2014-12-01] Is there a way to use ethical rounds to improve the ethical climate in health care? Two outpatient psychiatry clinics in Uppsala have been part of a study to find out if it is possible.

Marit SilénIt turns out that the staff appreciated participating in the ethical rounds and saw them as an important forum for discussing ethical questions. According to Marit Silén, who did the intervention as part of her postdoc at CRB, there weren’t any measurable differences in how staff perceive that ethical issue are handled in the workplace - the ethical climate -  before and after the intervention. Read more

Download report (in Swedish) or a short flyer about the results (also in Swedish).


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Online research ethics for scientists

[2014-11-24] There is growing concern about research integrity. Scientists need skills to manage the ethical aspects of their research. But they also need formal training in research ethics to meet demands from universities and funding agencies. But how can we make this training available and affordable? CRB has accepted the challenge and are now testing an online training programme that will be available next year.

Stefan ErikssonStefan Eriksson, Associate Professor of Research Ethics, is currently developing online training for medicine and the life sciences. At the moment, students from Egypt, Singapore, Germany, Italy and Sweden are testing the course to make sure it works for students with different professions, seniority and nationality. The idea is for around 15 students with different backgrounds to meet and discuss and perhaps not only learn from the literature and lectures, but also from each other.


Consumer genomics: changes on the horizon

[2014-10-28] The market for direct-to-consumer genetic testing has developed over the past decade. And the market for these products keeps changing.

Heidi C. HowardThe European Parliament recently proposed a new Regulation for in vitro diagnostic (IVD) medical devices. According to a paper in Science by Louiza Kalokairinou, Heidi Carmen Howard and Pascal Borry this could have drastic effects on the genetic test market in the future.


Brain simulation raises questions

[2014-10-22] What does it mean to simulate the human brain? Why is it important to do so? And is it even possible to simulate the brain separately from the body it exists in? These questions are discussed in a new paper published in the scientific journal Neuron today.

Simulating the brain means modeling it on a computer. But in real life, brains don’t exist in isolation. The brain is a complex and adaptive system that is seated within our bodies and entangled with all the other adaptive systems inside us that together make up a whole person. And the fact that the brain is a brain inside our bodies is something we can’t ignore when we attempt to simulate it realistically.

Kathinka EversToday, two Human Brain Project (HBP) researchers, Kathinka Evers, philosopher at the Centre for Research Ethics and Bioethics at Uppsala University and Yadin Dudal, neuroscientist at the Weizmann Institute of Science, publish a paper in Neuron that discusses the questions raised by brain simulations within and beyond the EU flagship project HBP.


Culture and ethics: current discussions

[2014-10-16] Most of us have heard about the divisions between nature and culture and science and ethics. But how could we challenge them? And what happens if we think about them again? In a recent article, members of the Network on Culture, Health and Bioethics take a second look.

Anna Lydia SvalastogIn a recent article in the New Zealand Online Journal of Interdisciplinary Studies they give a comprehensive summary of the discussions that are going on in different disciplines.

They point out research on Indigenous people as a special focus of discussion. Anna Lydia Svalastog from the Centre for Research Ethics & Bioethics (CRB) is one of the authors. According to her, work on indigenous populations highlight the cultural specificity of ethics regulations.


Research on patients with disorders of consciousness

[2014-10-13] There are a number of disorders of consciousness where patients are unable to communicate. There is a need for research on these patients to improve treatment and diagnosis. But since these patients don't talk in the common sense of the word, there are a number of ethical and legal problems attached to this research.

Michele FariscoMichele Farisco, Kathinka Evers and Carlo Petrini recently published a paper where they discuss the ethical and legal dimensions of biomedical research on patients with disorders of consciousness. According to them, informed consent to experimental treatments is a particularly challenging issue for these patients: Both from an ethical and legal point of view.

Kathinka EversIf we are to improve care and the clinical conditions for these patients, we need research. But all research is not experimental medical research. Observational studies of non-communicative patients also raise the issue of informed consent. In the second part of the article, the authors present an informed consent form for studies through video-recording of patients who are unable to communicate their own consent. The form has been designed within a project on methods of behavioral analysis of individuals in coma or vegetative state run by the Italian National Institute of Health.


Talking about death with dying children

[2014-10-09] Open and honest communication is important in palliative care, but what about families? When is the best time to talk to your child about dying? And how should you talk about death?

Li JalmsellA group of researchers have studied how parents with children dying from cancer communicated with their child about death. The results show that the child, not the parent, was often the one who initiated conversations about death. Parents often used fairy tales as a theme for these talks. Regardless of how old the child was.

Li Jalmsell is one of the authors. She is a PhD Student at CRB but also a medical doctor and has worked with cancer patients for many years. According to her, there is of course a fear that too much focus on death could cause harm.


Misdiagnosing unconscious patients

[2014-10-09] Assessing consciousness is not easy. The rate of misdiagnosis between vegetative states and minimally conscious states is astonishingly high.

Michele FariscoIn a recent article, Michele Farisco and Carlo Petrini discuss the ethical and scientific challenges of misdiagnosis of these patients. We use different kinds of consciousness assessments to diagnose patients with vegetative states (sometimes referred to as unresponsive wakefulness syndrome) and minimally conscious states. But how accurate and adequate are they? How can we decrease the rate of misdiagnosis?

According to Michele Farisco and Carlo Petrini, making sure patient's get the correct diagnosis is an ethically relevant demand on the scientific community. In the article they conclude that to date the best approach appears to be to integrate behavioural and instrumental assessments.


Neuroethics of pain and suffering in disorders of consciousness

Michele Farisco[2014-10-06] Michele Farisco and Adriana Gini presented a poster at the International Neuroethics Society Meeting last year.

Their abstract was selected and published in AJOB Neuroscience recently.


Morally responsible risk communication

[2014-09-30] Risk communication has to be effective. But it also needs ethical legitimacy. This has become particularly clear after the Fukushima nuclear disaster when three of the reactors suffered meltdowns. But how can we meet these demands?

Jessica Nihlén FahlquistIn an article that was recently published in the Journal of Risk Research, Jessica Nihlén Fahlquist and Sabine Roeser suggest a three-level framework for morally responsible risk communication: A legitimate procedure, an ethically justified risk message and evaluation of the effects of both message and procedure.

According to them, emotions also have an important part to play in risk communication. When it comes to addressing and explicating moral values, sympathy, empathy and feelings of responsibility have leading roles.


The principles for sharing

Deborah Mascalzoni[2014-09-23] 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. Deborah Mascalzoni, philosopher at CRB, is one of the authors.

Sharing stimulates research, making the process less burdensome. At least in theory. But the ethical and legal frameworks in different countries sometimes contradict each other, making collaboration difficult. The charter conforms with relevant regulation, both legal and ethical and provides a comprehensive tool for researchers. It deals with consent, data quality, criteria for acknowledgement and much more. It also provides a very hands-on too for data and material sharing agreements.


New view on family relationships

[2014-09-22] Healthcare today raises moral problems that don't really fit into the 'standard' bioethics. But if we re-phrase them in terms of problems in the ethics of families, they become visible. The authors of a  recent position paper on the ethics of families in the Journal of Medical ethics claim that we need a distinctive ethics for families in bioethics.

Ulrik KihlbomThe authors are members of the Network on Ethics of Families. Ulrik Kihlbom, Senior Lecturer in Medical Ethics at CRB, is one of the authors.  In the paper, they discuss what 'family' actually means and why families are so important to the people who live in them.


Want to do research on integrity?

[2014-09-09] Integrity is a commonly used but complex concept. In some cases, violating integrity can be acceptable, but what to people consider an acceptable violation? You could be the one who finds out!

Riksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences) is currently advertising three Flexit-positions as in-house researcher. One of the positions is at the Swedish Agency for Health and Care Services Analysis.

Vårdanalys wants a study on how societys' need for health and population data should be weighed against the integrity of groups and individuals. You will also be part of the research environment at CRB.

All information about this position is in Swedish. Application deadline: September 29. Read more: Flexit-utlysning 2014


Anna T. Höglund new adviser to the Vice-Chancellor for equal treatment

[2014-09-09] Anna T. Höglund, Associate Professor of Ethics and Senior Lecturer in Nursing Ethics and Gender Studies is the new adviser to the Vice-Chancellor for equal treatment.

Anna T. Höglund- I am honored and excited to be appointed adviser to the Vice Chancellor. I believe equal opportunities are important issues for the University. It is a question of democracy, but also a question of taking care of every employee's competence.


Telenursing challenges inequalities

[2014-09-05] Have you ever consulted a nurse on the phone? In most Western societies, chances are you have. And especially in Sweden where the entire country is connected to Swedish Healthcare Direct (SHD), or '1177'.

Anna T. HöglundIn a study from Uppsala University, Roya Hakimnia, Inger K. Holmström, Marianne Carlsson and Anna T. Höglund analyzed 20 calls made to 1177. According to them,, telenursing could potentially challenge inequalities in health care.  Through better awareness of gender biases and the callers’ different resources for making themselves heard, the communication might become more equal and better suitable for all callers.


Talking to patients that can't talk to us

[2014-09-02] There are several medical conditions that restrict or prevent consciousness. Patients with chronic coma, minimally conscious state and persistent vegetative states represent a range of changes in self-awareness. But how can we tell the difference?

Michele FariscoMichele Faricso has written a chapter in Current Topics in Behavioural Neuroscience together with Stephen Laureys and Kathinka Evers. According to them we need more scientific efforts  in neurotechnological assessment of consciousness and ‘cerebral communication’ with verbally non-communicative patients. But there is also a great need for ethical reflections.


Right to health

[2014-08-27] Access to health care and health rights is not the same around the globe. But how do health rights promote equality? And what role does access to health care play?

Anna-Sara LindA recent book on the right to health care and the public/private divide explores these questions. Studies from the US, UK, Brazil, Canada, the Netherlands, China, Nigeria, Sweden and many others try to answer whether health care promotes equality, or perhaps the opposite.

It looks at the consequences of adding 'right to health' to health systems. Authors with knowledge in legal and health systems in their respective countries, among them Anna-Sara Lind from Uppsala University, help readers see how the role of rights differ around the world.


How to communicate with the European composite administration

[2014-08-25] Let's say you want to influence European data protection regulation. What can you do to communicate your ideas in the EU? Jane Reichel has scrutinized the European composite administration to find out how it works. In an article in the German Law Journal she tries to show pathways for communication within the administration.

Jane ReichelJane Reichel, professor of administrative law at Uppsala University, She writes that the EU participatory form of democracy could have an independent function in EU democracy in the future. Introducing participatory democracy could in itself foster constitutionalization of communication procedures between citizens of EU countries, interest groups, associations and EU-institutions. According to her, this type of mechanisms could in fact be the only form of communication that is not bound by national borders, time limits and precise separations between institutions with different expertise in member states and the EU.


Plagiarism: a major problem for research

[2014-08-20] Plagiarism is a growing problem in the academic world. New cases are reported on every day and it makes up a substantial number of the misconduct cases we know of. But what counts as plagiarism? And is it always serious?

Stefan ErikssonAccording to Gert Helgesson and Stefan Eriksson, plagiarism can never be considered only a question about how many words of one text is repeated in another. In a recent article in Medicine, Health Care and Philosophy, they suggest that we should understand plagiarism as “someone using someone else’s intellectual product (such as texts, ideas, or results), thereby implying that it is their own”.


Neuroscientific evidence is not objective

[2014-08-06] There are many promises and premises of neuroscience being used as evidence in court. But as an Italian case of a pedophile using a brain tumour as defence shows us: neuroscientific evidence is not an objective tool.

Michele FariscoIn a recent article, Michele Farisco and Carlo Petrini discuss this case and come to the conclusion that neuroscientific evidence is not an unproblematic legal tool. According to the authors, this case underlines the fact that neuroscientific claims are not objective and that the same evidence can be interpreted differently by different experts.

In the article Farisco and Petrini write that the fact that this evidence was relevant deserves international attention. Uncertain scientific evidence can have a big impact on law.


Difficult to choose criteria for screening before pregnancy

Julia Inthorn[2014-06-17] Are you afraid of passing a genetic condition to your potential future children? Couples who plan pregnancy can use something called preconceptional genetic carrier screening to learn if they are both carriers of a recessive inherited disease.  But how can this difficult decision be made? A recent article by Julia Inthorn examines how fuzzy logic can help to think about the criteria used for screening.


Research for the patient and the professional

[2014-06-13] The relationship between the patient and the health care professionals is one of the themes we have explored at CRB. To help you find out more about our research in nursing ethics and the ethics of care we have put a report together.

If you want some reading for the summer, we suggest you download this pdf with abstracts of our publications and links to articles that are available electronically.


Nurses want clear 'do not resuscitate' orders

Mona Pettersson[2014-06-12] In a study that was recently published in Nursing Ethics, Mona Pettersson has interviewed 15 nurses from hematology and oncology wards in Sweden to find out how they experience no not resuscitate orders.

According to Mona Pettersson, nurses need clear and well documented orders. Patients and relatives need to be well informed an included in the decisions. But the nurse is not the only one involved in care. There is also a need for regular ethical discussions within the medical team to make sure nurses and doctors understand each others' opinions.


New book on the social life of the human brain

Kathinka Evers[2014-06-09] The human brain spends its days generating electrical impulses. But it also leads a social life that we need to learn more about.

Kathinka Evers is one of the editors of a recent anthology in Spanish will provide students with neuroscientific, philosophical, ethical and sociological insights.


Funding for family ethics

Ethics of Family[2014-06-04] Riksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences) is funding the Responsibility in change - Family ethics workshop held in Sandhamn on June 11-13 this year.

This is a meeting for the Network on Ethics of Family with participants from Groningen, Uppsala, Michigan, Newcastle, Gothenburg, Linköping and Lübeck.


Biobank and registry ethics - updated!

[2014-06-04] For many years, researchers at CRB have provided constructive advice on how to deal with ethical aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals and listed made a summary so that you can read them.

The report is available in pdf for download with links to online journals. If you want a paper copy, you are welcome to order from crb@crb.uu.se.


What can ERIC do for biobanking?

[2014-05-23] 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.

Jane ReichelAccording to the authors, one of the biggest hurdles for biobank research today is the differences in regulatory frameworks for biobanking within the EU. Unfortunately, according to the authors, the ERIC does not in itself provide substantial tools to help solve this problem.


Dynamic privacy for rare disease research

Deborah Mascalzoni[2014-05-19] With only a handful of patients in a country, rare disease research depends on international collaborations. The right to withdraw can have unfortunate consequences with lost data jeopardizing already difficult research. But how can researchers respect patients and their right to privacy and still protect the quality of their research?

Mats G. HanssonPrivacy rights that are regulated through traditional informed consent have been looked on as the major barrier for international data sharing. In a recent article in Applied and Translational Genomics, Deborah Mascalzoni, Angelo Paradiso and Mats G. Hansson writes that privacy often has been interpreted as the right to secrecy. In the article they claim it can hold another meaning: the right to manage your own private sphere.


Open science and sharing data

[2014-05-16] There is a tension between large scale data sharing and the protection of individual data. In September last year an interdisciplinary workshop on open science and data sharing was held in Italy. In a recent paper, a group of researchers including Deborah Mascalzoni from CRB report summaries of presentations and discussions.

Deborah MascalzoniAccording to the authors there is a need to integrate top-down initiatives from governments, institutions and journals with bottom-up approaches from the scientific community. The societal benefits of open science have to be communicated better to explain the benefits. For example the importance of data sharing to avoid the spread of infectious disease.


User friendly tools manage blood pressure

[2014-05-06] One problem with treating hypertension is getting the patient to adhere. There is a need for user friendly tools that help patients' understand how blood pressure, wellbeing and life style are interconnected.  But what should it look like?

Lena RingA group of researchers are on their way to designing a tool. In a recent study, Ulrika Bengtsson, Karin Kjellgren, Stefan Höfer, Charles Taft and Lena Ring used focus groups to test how patients understand an interactive mobile phone self-report system. .


What is a bio-object worth?

[2014-05-05] Stem cells, chimeras and other bio-objects are a new type of entity: A biological object created by technology. There is a lot of tension and controversy around them. An embrynoic stem cell is no longer an embryo. But what is it worth in its new form?

Anna Lydia SvalastogAccording to Anna Lydia Svalastog, the value of a bio-object varies depending on the context. In a recent article in the Croatian Medical Journal Anna Lydia Svalastog writes that the context bound identity and value of bio-objects makes it ideal for the humanities to study.

Read article in the Croatian Medical Journal: The value of bio-objects and policy discourses in Europe


The need for research ethics in the Middle East

[2014-03-26] What are the needs for research ethics capacity in the Middle East?

Amal MatarA recent article by Henry Silverman, Hillary Edwards, Adil Shamoo and Amal Matar in the Journal of Empirical Research on Human Research Ethics relates the experiences of an international research ethics training programme aimed at low- and middle income countries in the Middle East.


Limits of mind reading

[2014-03-21] Do we have to understand how you think to read your mind? In a recent article, Kathinka Evers and Kathinka EversMariano Sigman explore the possibilities of mind reading using fMRI and trace conditioning. Today we can measure brain states even when a person appears unconscious.

But these technologies can do more than help patients. According to the authors we should be aware of misuse. Especially since there is promise of important medical breakthroughs, there is ethical concerns if possibilities are hyped or results misinterpreted.


Neuroscientific explanations in court rooms

[2014-03-20] The defence in a recent Italian case usedMichele Farisco fMRI-evidence to claim that a brain tumor was the reason behind a case of child molestation. There were different interpretations of the evidence and in the end the defendant was sentenced to five years in prison.

In a recent article in AJOB Neuoscience, Michele Farisco writes that the introduction of neuroscientific evidence in courtrooms is challenging. Assessing the relevance and strength of the evidence is difficult.


Trustworthiness requires more than guidelines and review

[2014-03-14] Research Linus Johnssonethics has developed into an extra legal regulatory system. Guidelines serve as steering documents,committees oversee and consent procedures are formal.

This is often justified with reference topast atrocities. In a recent article in Research Ethics, Linus Johnsson, Stefan Eriksson, Gert Helgesson and Mats G. Hansson call this 'institutionalized distrust' and claim that this approach has some limitations.


Incidentally discovered diseases - not time for a biobank policy yet

[2014-03-14] Imagine that you allow brain imaging on yourself, for research purposes, and a tumor or a blood vessel with thin walls is incidentally found.

How incidental findings, complex genetic Jennifer Vibergrisk information that is multidimensional and has unclearpredictive value should be handled is discussed in a recent article in print in the European Journal of Human Genetics The article is written by Jennifer Viberg together with Mats G. Hansson, Sophie Langenskiöld, and Pär Segerdahl


Science communication in "knowledge landscapes"

[2014-03-06] Researchers and scientists need to communicate new knowledge to society. In a recent paper, Anna Lydia SvalastogAnna Lydia Svalastog togehterwith Joachim Allgaier, Lucia Martinelli and Srecko Gajovic suggest that today, researchers, PR consultants, interest groups, policy makers and lay people interact on the Internet, creating "knowledge landscapes" where knowledge is interrelated, framed and shaped.


Pretend play can facilitate treatment and improve quality of life for children with cancer

[2014-01-15 ] In health care, and particularly in children’s cancer care, it is difficult for children to gain a sense of understanding , control and involvement . This may cause fear and discomfort.
An international collaboration involving experienced Mats G. Hanssonresearchers, clinicians  and ethics researchers, will examine if pretend play have a positive effect on children aged 3-10 years, and their integration in the treatment and decision-making processes regarding their cancer.

The research project is a collaboration between Uppsala University, Uppsala University Hospital, Case Western Reserve University in Cleveland and the University of Hamburg .


Karl Sallin will study pervasive refusal syndrome as a disorder of conciousness

[2014-01-24] Despite severe symptoms apparently Karl Sallinaffecting consciousness, pervasive refusal syndrome has received little attention from neuroscience. Karl Sallinhas initiated a collaboration between clinicians and neuroscientists in order to study PRS as a disorder of consciousness.


Too quiet on the ethical and social implications of genetic testing

[2013-12-16] 99 US dollars will buy you Karl Sallina genetic test and information about what diseases you are at risk of developing in the future.

But there is not enough discussion on the ethical and social implications of genetic testing.


Michele Farisco studies ethical and legal issues surrounding disorders of conciousnessMichele Farisco

[2013-12-12] CRB proudly adds Michele Farisco to its international and multidisciplinary profile. Michele Farisco will study ethical and legal issues emerging from neuroscientific investigations of disorders of consciousness.


Grant for research on physical activity during cancer

[2013-11-04] The Swedish Research Council has granted professor Karin Nordin SEK 9.6 million in for the PhysCan project.Karin Nordin The research group examines how physical activity can help combat extreme fatigue during cancer. Karin Nordin has previously this year been granted SEK 12,4 million from Cancerfonden. 


Kathinka Evers appointed honorary Kathinka Evers professor in Chile

[2013-10-21] Kathinka Evers hasbeen appointed honorary professor atUniversidad Central de Chile. The appointment will be formally announced at a ceremony in November. Kathinka Evers will also lecture at several universities in Chile.


Silent agreement enables cheating

[2013-10-02] Leaders, doctors, coaches and sponsors are vital to athletes, especially when transferring attitudes and values.Ashkan Atry

When we discuss different dimensions of doping, we usually hold the individual solely accountable. Ashkan Atry, PhD Student at theCentre for Research Ethics & Bioethics (CRB) argues that there is a need for a broader social dimension to accountability, if we are to get a more accurate understanding of how doping culture works.


Amal Matar studies ethical issues concerning preconception genetic screening

[2013-10-09] The international profile and competence at CRB has been strengthened once again, as Amal Matar joins the team.

Amal Matar is a graduate of Ain Shams University Medical School in Cairo. She holds a Masters of Science in Biotechnology from the American University in Cairo, and completed the Middle East Research Ethics Training Initiative Certificate Program in Internal Research Ethics at the University of Maryland in 2012. Amal Matar

Amal Matar worked at the Egyptian Ministry of Health for seven years and has participated in several conferences and workshops as a speaker on research ethics in the Middle East.

In her PhD project Amal Matar will study ethical issues concerning preconception genetic screening, as it raises general concerns of genetic testing and counseling, and the handling of information and risk assessments. It also raises questions surrounding the decision-making process and consent procedures, and concerns about screening programs. A central question to the project is how preconception genetic screening accentuates and influences our familial responsibilities. This project will be pursued in cooperation with The Ethics of Family in Health and Social Care Research Consortium.

On October 14, Amal Matar will hold an open seminar on the subject of research ethics in Egypt.


CRB coordinates unique research collaboration on genetic risk information

[2013-10-16] The Swedish BiobankFoundation for Humanities and Social Sciences has granted CRB and research partners SEK 35,9 million to conduct research on how to manage and handle genetic risk information.


CRB researchers question revision of the Helsinki Declaration

[2013-09-22] The Declaration of Helsinki is under revision. In the latest issue of Science, Joanna Stjernschantz Forsberg and Yusuke Inoue question a change that could have consequenses for important research on samples and data.

According to the authors, there is a need for further discussion before accepting this revision.


Research grants for Anna Höglund

[2013-09-20] Anna Höglund, Senior Lecturer in Nursing ethics at CRB, and Erica Falkenström from Stockholm Centre for Organizational Research (SCORE) have received SEK 3.2 million from AFA Försäkring for the project: Ethical competence in healthcare management.


EU data protection legislation threatens rare disease research

[2013-04-23] Research on rare diseases requires international collaboration and movement of samples and data across national borders. Currently the EU is discussing new data protection legislation that would make this type of research difficult. In the latest issue of Nature Review Genetics, Deborah Mascalzoni et al writes that the EU needs to make an exception for scientific research. Read more


Deborah Mascalzoni joins our team!

[2013-04-23] The latest addition to our group is Deborah Mascalzoni who joined our team of researchers in April this year.

Deborah Mascalzoni adds to our competence on the ethical issues related to biobank and registry research and brings new expertise on rare diseases. A perfect fit for CRB's role in the 7th framework project RD-Connect with a focus on rare diseases.
Read more


EU project will increase researcher access to biobanks

[2013-04-23] All of us stand to benefit from large European health studies, but it is not always easy for researchers to collaborate across national borders. To help enable collaboration, the international EU-funded project BBMRI-LPC will spend the next four years working to increase researchers’ access to samples and data. Researchers at CRB have a key role in the project. Read more


Patients pay the price for EU's data protection legislation

[2013-03-27] The European Union is suggesting new data protection legislation that, if it is passed, will seriously impair biomedical research. In an article in Lancet Oncology, Mats Hansson and a group of European researchers write that this his will have consequences for patients in the future. Read more

Blogpost about this article: Don’t shoot at the patient (or at the messenger)


Simplified ethical review and consent procedures benefits patients

[2013-03-21] In the Lancet Oncology today, Mats G. Hansson et al writes that patients are the victims when the European Parliament committee put up bureaucratic hurdles in the form of increased ethical review and overly strict information and consent procedures.

The risks posed by research on genetic information, stored biospecimens and registries are mostly informational. Many of these studies produce results that have direct health benefits for patients, who are the ones who stand to benefit from simplified review and consent procedures.

Read article: Patients would benefit from simplified ethical review and consent procedure


Want to do a PhD at CRB?

[2012-03-19] We are looking for two new PhD students to join our team! One position is in research ethics/bioethics, with either a focus on pre-conception genetic testing or the regulation of research misconduct. The other is in bioethics/philosophy of mind.

CRB is a multi-disciplinary research environment and we are looking for applicants with different backgrounds.

Application deadline: April 22


Ethical challenges in biobank research on Sámi people

[2013-03-15] In her work, Anna-Lydia Svalastog found unregistred Swedish biobank collections with matierals from Sámi people. According to her, these collections holds ethical challenges concerning donors identification, categorization of the material, the role of regional ethical committees, governance and Sámi representation.

In a recent article in New Genetics and Society, she suggests solutions focusing on transparency and traceability, competence and native peoples' rights and representation in biobank-related activities.

Read more and discuss this on the ethics blog

Read article: Making it transparent. On naming, framing and administrating biobank research on native people


Mats G. Hansson expert in government committee on registry based research

[2013-03-14] The Swedish Government will propose legislation to regulate the LifeGene research registry at Karolinska Institutet. To aid this process, the ministry of education and research recently appointed a committee to look at the pre-requisites for registry research in Sweden. Mats G. Hansson, director of CRB, is one of the appointed experts.

The committee will propose a more general solution for registries that collects information that is meant for use in several different research projects.

Read more about registry research and LifeGene on the Ethics Blog.


Scientists have a responsibility for research that can be used to harm

[2013-03-07] Do scientists have a responsibility for research that is used to harm others? In a doctoral thesis from Uppsala University, Frida Kuhlau discusses to what extent Life Science researchers have a responsibility to prevent their research from being used to develop biological weapons. Read more >


Doing research in Bioethics: Challenges and methodology

[2013-02-20] Welcome to a workshop for PhD students and young researchers doing bioethics on May 16 2013. Registration deadline April 15.
More information


Researchers are guardians of trust in biobank research

[2012-02-18] Do we trust biobank researchers? In a doctoral thesis from Uppsala University, medical doctor and bioethicist Linus Johnsson claims that we do: At least in Sweden. And since we do, researchers in turn have a moral responsibility towards us. Read more >


Research participation as a moral duty

[2013-02-04] We can't take effective healthcare for granted and we need medical research to be able to provide it. This is the basis for a hypothetical argument that Joanna Stjernschantz Forsberg and her co-authors use to justify why research participation should be viewed as part of a social contract. In an article in the Journal of Medical Ethics they argue that since none of us knows what kind of healthcare we will need in the future, we have a moral obligation to participate in research. This is based on our mutual (individual and societal) need for medical advances.

Read article: Stjernschantz Forsberg J, Hansson MG, Eriksson S, Why participating in (certain) scientific research is a moral duty, J Med Ethics, online pre-publication, doi:10.1136/medethics-2012-100859


HandsOn: Biobanks on film

[2013-02-01] The BBMRI.se conference HandsOn: Biboanks was held held in Uppsala last September. The conference has now become a six minute video that includes an interview with Joanna Stjernschantz Forsberg.

The conference was a success, with participants from 27 countries. The concept will be repeated by BBMRI-NL somewhere in the Netherlands on 21-22 November this year. You can follow the event on Facebook.


Book launch: Ethics and research on human remains

[2013-01-31] This afternoon, the Norwegian National Research Ethics Committees launches a book entitled More than just bones: Ethics and research on human remains.

CRB's Malin Masterton has contributed with a chapter on our duties to past persons and the moral standing and posthumous interest of old human remains, and there are more contributions from Norwegian, Danish and English researchers.

On the Ethics Committees website, the editor Hallvard Fossheim says that the hope is that this book will aid discussion and ethical debate.

Download or order a copy of the book: More than just bones: Ethics and research on human remains


Things to think about in observational studies

[2013-01-30] In the Journal of the Swedish Medical Association, Stefan Eriksson and Erik Sundström writes that research can become more efficient if data is shared and used in new research. They also think that it should become easier to use health care based quality registries in research.

According to the authors, examining patient records, registry research and other kinds of observational studies share may ethical issues with other kinds of research on humans. But there are some ethical issues that are more specific to epidemiological research: Namely questions regarding personal integrity and data security that appear when data is collected, handled and shared.

Misconduct and conflicts of interest, on the other hand, are present in all kinds of research. But according to the authors, there are also some more general principles to consider: It can be unethical not to conduct certain research, or to obstruct it. Conducting research of such poor quality that the wrong conclusions are made can also be an ethical problem.  
Read article (in Swedish): Eriksson S, Sundström E, Etiska aspekter att tänka på i observationsstudier, Läkartidningen 2013;5(110):220-222.


Ethical challenges of human brain simulation

[2013-01-28] One of the greatest challenges of modern science is understanding the human brain. Uppsala University’s Centre for Research Ethics & Bioethics (CRB) is part of the European Commission flagship initiative to simulate the human brain and will look at the philosophical and ethical implications of this. Read more >


Attitudes to doping

[2013-01-14] The world of sports is concerned with doping and other rule violations. This is often considered an individual sportsman's probem. But the emotional processes behind the attitudes a person holds towards rule violationsare influenced by social factors. In a recent paper in Sport, Ethics and Philosophy, Ashkan Atry et al. examines moral responses to doping. According to the authors, discussing doping as an individual problem might be an ineffective way of dealing with the problem. They recommend a twofold approach where social processes in the field of sport have to be adressed along with the education focusing on personal attitudes.

Read article: Atry A, Hansson MG, Kihlbom U, Beyond the Individual: Sources of Attitudes Towards Rule Violation in Sport, Sport, Ethics and Philosophy, 2012;6(4):467-479.


Commercialization of tissues for research

[2013-01-08] Commercializing biobank research is controversial. The idea of paying individuals for the use of their samples clashes with the views that commercialization of human material is inherently wrong and may have dire consequences. So does the possibility of biobanks selling the material to other biobanks or researchers.

In a recent article in Biopreservation and Biobanking, Kathinka Evers, Joanna Stjernschantz Forsberg and James F. Eliason comment on this important issue, aiming to encourage debate. According to Evers and Forsberg, putting biobank samples to the best possible use is vital to the needs of patients. In their view this points against both paying donors for their samples and directly marketing materials stored in biobanks.

Read article: What Are Your Views on Commercialization of Tissues for Research? Evers K, Stjernschantz Forsberg J & Eliason JF, Biopreservation and Biobanking, 2012;10(6):476-478.


Ethical competence in dual use life science research

[2012-12-19] Some life science research has dual use implications. The pressure on scientists to recognize and assume responsibility for the potential misuse of their research for biological weapon purposes is increasing. In an article in the Journal of the American Biological Safety Association, Frida Kuhlau et al. argue that dual use awareness is essential to the development of a culture of responsibility, but not enough. In the article, they introduce the concept of ethical competence to describe awareness, but that is not enough. Scientists also need the capacity for reflection and action. According to the authors, leadership and organizational support are factors that help build and sustain ethical competence. They also believe that the life science community may need to involve other actors and their competences to safeguard dual use research.

Read abstract: Applied Biosafety: Ethical competence in dual use life science research


New article on actions promoting a positive ethical climate

[2012-11-19] In a recent article in Nursing Ethics, Marit Silén et al report the results form an interview study with acute care ward nurses on what promotes positive ethical climate. Factors reported by the nurses were meeting the needs of patients and next of kin in a considerate way. They also said that receiving and giving support and information within the work group promoted a positive ethical climate. As did working as a team with a standard for behaviour within the work group. Read article: What actions promote a positive ethical climate? A critical incident study of nurses' perceptions


Looking for two researchers to join our team!

[2012-11-06] CRB is currently recruiting two researchers. We need two creative persons who likes to collaborate and work in a multi-disciplinary environment and are fluent in English.

We are looking for a person with a doctoral degree in health economics with documented skills in Discrete Choice Experiments. We are also looking for a researcher in ethics/biobank/registry research regulations. This is a person with a doctoral degree in ethics or law, or someone with a doctoral degree in medicine or life sciences with an interest in ethical issues.

Both positions have a 2 year period of appointment, with possible prolongation. Application deadline: November 29 2012

Read more:

Researcher in health economics (UFV-PA 2012/2684)

Researcher in ethics/biobank/registry research regulations (UFV-PA 2012/2683)


The Neuroethics Blog writes about responsible neuroethcis and neuro-rubbish

[2012-07-19] Julia Haas writes about an article in the spectator by Roger Scructon (Brain Drain) and Pär Segerdahl's response in the Ethics Blog.

Read Julia Haas' post in the Ethics Blog: Kathinka Evers: On 'Responsible Neuroethics' and Neuro-rubbish


To the origins of the human mind: Interview with Kathinka Evers

In connection with a lecture on the rise of neuroethics, the Centre de Cultura Contemporàna de Barcelona published an interview with Kahtinka Evers. You can view the whole interview on the CCCB website (in English).

DEBATE // To the Origins of the Human Mind - Interview Kathinka Evers


Kathinka Evers speaks about the rise of neuroethics

[2012-05-24] On Tuesday, Kathinka Evers will speak about the rise of neuroethics in the series The origins of the human mind arranged by the Centre de Cultura Contemporàna de Barcelona.


Incidental DNA findings should be validated before donors are told

[2012-04-26] In a letter to Nature, Mats G. Hansson writes that assigning access rights to non validated research findings could be putting the cart before the horse. The letter is a response to Natures report on recommendations that US biobanks should inform participants in genome studies of incidental findings.  
Read letter in Nature: Biobanks: Validate gene findings before telling donors


Political ambitions threaten the intellectual integrity of bioethics

[2012-04-03] Ashkan Atry, PhD student at CRB, is now a guest writer on the ethics blog. In his first post, he asks if there is a need to enhance the way bioethicists discuss enhancement. Read this and other posts on the ethics blog!


Ethics bureaucracy: a significant hurdle for collaborative follow-up of drug effectiveness in rare childhood diseases

[2012-02-22] New edictorial in Archives of Disease in Childhood by Mats G. Hansson, Marco Gattorno, Joanna Stjernschantz Forsberg et al. Read extract >


CRB's research scores top quality in evaluation

[2012-01-31] In last year’s research evaluation at Uppsala University, CRB’s research was graded world-leading level. After the evaluation, Mats G. Hansson, director of CRB, initiated an internal process to work with the feedback from the international expert panel that looked at the centre’s research. Read more >


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