Centre for Research Ethics & Bioethics (CRB)


New issue of Biobank Perspectives

[2015-09-28] The latest issue of our newsletter on issues in biobank ethics and law is out!

This time you can read about a statement paper in the American Journal of Bioethics that suggests using broad consent for biobank research. We take you through the European Union’s efforts to agree on data protection and the launch of B3Africa that will bridge European and African biobanking and biomedical research.

We are also happy to announce that the International Charter of principles for sharing bio-specimens and data has received a recommendation from the International Rare Diseases Research Consortium IRDiRC. 

Lecturer in medical ethics

[2015-09-14] We are currently looking for a senior lecturer in medical ehtics to teach students at the medical school and a course in public health ethics.

You must be able to speak Swedish. Application deadline October 11.

Read more and apply

Guideline for sharing specimens and data receives IRDiRC recommendation

[2015-08-25] The International Charter of principles for sharing bio-specimens and data has received a recommendation from the International Rare Diseases Research Consortium IRDiRC.

IRDiC recommendedThe Charter is part of CRB's work with the ethical, legal and social issues (ELSI) in the RD-Connect platform.

Funding for caring science

[2015-06-29] The disciplinary domain for medicine and Anna T. Höglundpharmacy have awarded Anna T. Höglund 200 000 SEK to continue Mona Pettersson’s PhD project on DNR-orders (Do Not Resuscitate) in oncology care.

THE ETHICS BLOG: All you need is law? The ethics of legal scholarship

[2015-06-09] Working as a lawyer in a multidisciplinary centre for research ethics and bioethics, as I Moa Kindström Dahlindo, often brings up to date questions regarding the relationship between law and ethics. What kind of ethical competence does academic lawyers need, and what kind of ethical challenges do we face? I will try to address some aspects of these challenges.

Trust based consent looks promising

[2015-06-02] Finding a model for informed consent that protects the integrity and interests of participants, future patients and researchers isn't easy.

Mats G. HanssonIn the June issue of Biobank Perspectives, Mats G. Hansson writes that trust-based consent (a modified version of broad consent) has proven successful both for information to participants and for providing a useful resource for important research.

Swedish research database legislation: update

[2015-06-02] Research databases like the Swedish Life Gene project have proven problematic and the Anna Sara Lind is Associate Professor of Public Law and Editor of Biobank PerspectivesSwedish 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.

Read Anna-Sara Lind's update in Biobank Perspectives

Genetic risk: do people want to know?

[2015-06-02] Ethicists, regulations and researchers have struggled with whether or not to disclose Jennifer Vibergincidental findings. There has been a shift in the discussion on incidental findings. In recent years, the focus has shifted from discussing what kind of information researchers should give participants, to asking participants what they want to know. In a recent paper in Bioethics, researchers from the Centre for Research Ethics & Bioethics (CRB) claim that shifting the responsibility from researcher to participant comes with a number of problems.

Information and law in transition

[2015-06-02] 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.

Anna Sara Lind is Associate Professor of Public Law and Editor of Biobank PerspectivesA number of prominent scholars from Europe and North America analyze the developments of information and law from their respective perspectives in the new book Information and Law in Transition.

ETHICS BLOG: Where is consciousness?

[2015-05-26] Would it be possible to use brain imaging techniques to detect consciousness and then Michele Farisco“read” directly in people’s brains what they want or do not want? Could one, for example, ask a severely brain injured patient for consent to some treatment, and then obtain an answer through a brain scan?

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Online training: Research ethics for medicine and the life sciences

Global research infrastructure for biobanking

[2015-09-28] 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.

Jane ReichelThe partnership has two strategic aims: One is to create a harmonised ethical and legal framework between European and African partner institution. The second is to provide an "out-of-the-box" informatics solution for data management, processing and sharing that works with limited Internet access.

Jane Reichel is Professor of Administrative Law at Uppsala University and leads the ethical and legal work. According to her, a shared ethical and legal framework is necessary if the informatics platform is to fill its purpose and allow data and bio-resources to be shared between countries and continents. Read more

Renewed European effort to agree on data protection

[2015-09-28] 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.

Anna Sara Lind is Associate Professor of Public Law and Editor of Biobank PerspectivesRight now, intense efforts are made to agree on a common view on data protection in the European Union. In accordance with the legislative process of the European Union, the three institutions have – at different times – over the last years produced one document each of their version of how a regulation should be written. It is noteworthy that the three versions differ rather heavily when it comes to matters having an impact on biobank research. When comparing the documents from the three institutions, it is clear that the Council is more generous towards research. The European Parliament on the other hand is striving for a stronger protection for personal integrity in all fields, even research. Read more

Families need care when children are dying

[2015-09-21] 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.

Li JalmsellBoth information and family involvement in care can improve the child’s wellbeing at the end of life. But it is also good for the families. In her interviews with children with cancer, Jalmsell found that children want information about what is going to happen, bad news included. As long as it is presented in a hopeful way. Read more

Bioethics scholars recommend broad consent

[2015-08-27] 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.

Mats G. HanssonAn international working group of bioethics scholars recently published a target article in the American Journal of Bioethics. They come to the conclusion that Broad Consent is the preferred solution for balancing patient interest related both to protection of privacy, respect for autonomy and the need to develop and improve medical treatment. The article is the outcome of a workshop of the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens arranged by the US National Institutes of Health (NIH).

Read article: Broad Consent for Research With Biological Samples: Workshop Conclusions

Mats G. Hansson is one of the scholars behind the article. He has followed the discussions on informed consent for the better part of his career and recently wrote about a model for broad consent called trust based consent for our newsletter Biobank Perspectives: Trust based consent looks promising

Patients don’t understand the purpose of clinical drug trials

[2015-08-17] 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.

Tove GodskesenOn August 28, Tove Godskesen will defend her PhD thesis where she has looked at the reasons why cancer patients participate in clinical drug trials and whether they understand the information they have received. She shows that most patients have been adequately informed, are satisfied with their participation and able to recommend others to enroll in studies. But a small group of the patients, who also are the most ill, that had trouble understanding what participation in a drug trial entails. According to Tove Godskesen this is an ethical dilemma for clinical research that risks diluting the practice of informed consent. Read more

Meet an editor: Pär Segerdahl

THE ETHICS BLOG: Dissertation on palliative care of children with cancer

[2015-09-21] Approximately every fifth child who gets cancer in Sweden dies from their disease. In her dissertation work at CRB, Li Jalmsell studied the care of these children at the end of their life from both the child’s and the parents’ and siblings’ perspectives.

Pär SegerdahlOne of her findings is that one doesn’t generally recognize that the child’s cancer is beyond cure until very close to death, giving little time to plan palliative care based on personal preferences.

Jalmsell also did surveys with parents and siblings who lost a child/sibling, and interviewed children with cancer. The children themselves emphasize in the interviews that they want honest information, even when it is bad. But they also want the conversations to be hopeful and contain a plan ahead; and they want to be informed simultaneously with the parents (not after the parents). Read the rest of the post

Want to hear more of what Pär Segerdahl and colleagues have to say? Visit the Ethics Blog!


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Journal club: Discussion about ”Libertarian Paternalism” by Thaler and Sunstein
When: 13:00-14.30
Where: Boströmrummet, BMC

Application deadline: Senior lecturer in medical ethics
Read more and apply

Antibiotic resistance: causes and issues
Mirko Ancillotti, Research Assistant, CRB
When: 13:00-14.30
Where: Boströmrummet, BMC

Reproductive Ethics: Islamic Perspectives
Workshop, Uppsala
When: All day
Where: SciLifeLab, BMC

Public lecture: Ethical Issues in Human Reproduction Religious differences, reproductive tourism, assisted reproduction and conscientious objection Speaker: Gamal Serour, Al Azhar University
When: 16:30-18:00
Where: Akademiska sjukhuset, Ing 95/96, Rosénsalen

Cardiovascular risk communication in primary care - GP trainees’ perspectives
Sofia Lavén, PhD Student, CRB
When: 13:00-14.30
Where: Boströmrummet, BMC

To draft a legal and ethical framework for European/African biobank collaboration - some preliminary thoughts
Jane Reichel, Professor of Administrative Law, CRB
When: 13:00-14.30
Where: Boströmrummet, BMC

More activities and event
calendar >


Newsletter on current issues in biobanks ethics and law

CRB's legal experts guide you through the recent implications and updates on biobank ethics and law.

Books and reports

Most of our research is published in peer review articles and books, but we also publish the occasional project report or popular science book.

Want to visit CRB?

Our international profile has developed the last few years and we have decided to start welcoming visiting scholars for shorter or longer stays. Subject to external funding we offer office space, a dynamic and interesting research environment and extended international networks to senior researchers, post-docs and PhD students.

Rules and Guidelines for research

CODEX is a gateway to various research ethics guidelines. It is run in collaboration between CRB and the Swedish Research Council.


Our international research collaborations

CRB is part of several large international research collaborations. We work in several EU-projects with biobank and registry research. We are part of the EU Flagship Human Brain Project and other international collaborations on neuroethics. We are also active in working networks on family ethics and culture, health and bioethics.