Centre for Research Ethics & Bioethics (CRB)

Recent

Neuroethics: Interview with Kathinka Evers in 3:AM Magazine

[2015-12-21] 3AM Magazine just published an interveiw with Kathinka EversKathinka Evers about ahat "neuroethics is and what its questions are, about the distinction between fundamental and applied neuroethics, about the relationship between brain science and sociology, about how her approach avoids both dualism and naive reductionism, about mind-reading, about the ethical issues arising from disorders in consciousness, about brain simulation and its relation to philosophy, about whether tendencies in the brain lead to social or individualistic interpretation, about epigenesis, human enhancement, cognitive prosthetics and the singularity" Read interview >


Ethics Blog: Trust, responsibility and the Volkswagen scandal

[2015-12-15] Volkswagen’s cheating with carbon emissions Jessica Nihlén Fahlquistattracted a lot of attention this autumn. It has been suggested that the cheating will lead to a decrease in trust for the company, but also for the industry at large. That is probably true. But, we need to reflect on the value of trust, what it is and why it is needed. Is trust a means or a result?


Ethics Blog: Scientists shape how the media portray synthetic biology

[2015-10-27] Most of us learn Mirko Ancillottiabout scientific developments through the media. Journalists and newspaper editors not only select what to Josepine Fernowbring to public attention but also the way the contents are conveyed. But how can we be sure that what they report is well researched?

There are some new studies on how media portray synthetic biology in different countries. It turns out that reports are both unbalanced and uncritical.


Ethics Blog: The challenge to simulate the brain

[2015-10-07] Is it possible to create a computer simulation of Michele Fariscothe human brain? Perhaps, perhaps not. But right now, a group of scientists is trying. But it is not only finding enough computer power that makes it difficult: there are some very real philosophical challenges too. Read Michele Farisco's post on the Ethics Blog.


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.


Bioethicists suggest broad consent for biobank research

[2015-09-28] It is still unclear what kind of consent should be used when collecting biological Mats G. Hanssonsamples for future research. Different forms of consent are practiced. This creates another uncertainty: which research is actually permitted with the collected samples?


Renewed European effort to agree on data protection

[2015-09-28] The European Data Protection Regulation keeps Anna Sara Lind is Associate Professor of Public Law and Editor of Biobank Perspectivesmoving 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.


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.


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Online training: Research ethics for medicine and the life sciences

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

[2015-12-09] 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.

Moa Kindström DahllinBBMRI-ERIC will provide a workable research infrastructure to process, share and store human biological samples, including associated medical data. Part of this work is providing a common service for the ethical, legal and societal issues. Our expert team is part of this service with Mats G. Hansson, professor of biomedical ethics, Heidi C. Howard, geneticist and bioethicist, and myself representing public law.

From a legal perspective, we map out and analyze the relevant law: locally and globally. Many of the legal themes relate to data protection and sharing of data: Situations where the individual's right to privacy is challenged by the public interest to promote research and gain new knowledge. Read more

Meet a PhD student: Amal Matar

Unsafe harbours for researchers

[2015-12-09] 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.

Anna Sara Lind is Associate Professor of Public Law and Editor of Biobank Perspectives

The Court of Justice of the EU has during the last years at several occasions ruled in favour for a stronger protection of personal integrity. This development coincides with the intense negotiations of the EU regarding a new regulation for data protection. In a recent case (C-362/14 Schrems v. Data Protection Commissioner), the Court analyzed the possibilities of transferring personal data from the EU to the US. It ruled that commercial and political interests are less important than the individuals' right to personal integrity. This case concerned the so called Safe Harbour Clauses. Read more

How people value risk information

[2015-12-09] 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.

Jennifer Viberg & Arvid PuranenRisk information is complex. Risk can be high or low, sometimes there is treatment, conditions debut at different ages, are more or less severe, sometimes hereditary, and sometimes fatal. Finding out what people want to know requires more than simple 'yes and no' questions. Whole genome sequencing will become more common in biobank studies, and Jennifer Viberg is on her way to finding out whether research participants want information about incidental findings in genetic and genomic research.

The SCAPIS (Swedish CardioPulmonary bioImage Study) population is large, collecting blood samples and health data from 30,000 men and women between 50 and 64. Hopefully, the results will be implemented in health care. Arvid Puranen is just starting his PhD, looking at how participants perceive risk for disease and how they would like health care professionals to communicate about it. Watch this space for updates!

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

THE ETHICS BLOG: Ethical questions raised by experiencing another culture

[2015-12-18] When I first moved to Sweden, I was pretty excited to explore a new country and experience Swedish culture and life. In many ways I had not expected the extent of the difference between what I was familiar with and Swedish culture.

Amal MatarI assumed, naively, that I would be in a familiar setting because I had been to other countries. One of my preconceptions was seeing all Western countries as similar, another was believing that European countries shared the same values and culture. But I was proven wrong.

Being brought up in Cairo, Egypt, I was raised in a comparatively restrictive patriarchal family-oriented environment where gender roles are very specific. Although this is by no means uniform and there are exceptions to the rule as well as big variation among Egyptian urban and rural contexts, the overarching tendencies in terms of law and societal expectations are quite gender specific. For example, modesty is expected from women at all times in terms of dress and behavior, even when they are ill or seeking reproductive health advice. Read entire post

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

 

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Calendar

2016-02-08
Journal Club: Discussion about “Integrated empirical ethics: loss of normativity?” by Scheer and Widdershoven
When: 13:00-14.30
Where: Boströmrummet, BMC


2016-02-15
Using best-worst scaling to explore final year medical students and general practitioners (GP's) preferences for chronic pain management - Can this really work?
Giselle Gallego, Visiting Professor at the Department of Pharmacology and Clinical Neuroscience at Umeå University
When: 13:00-14.30
Where: Boströmrummet, BMC


2016-02-22
New legislation for organ donation: discussion
Stefan Eriksson, Associate Professor of Research Ethics, CRB
When: 13:00-14.30
Where: Boströmrummet, BMC


2016-03-07
Patient choice – what happened to doctors’
responsibility?
Ulrika Winblad Spångberg, Senior Lecturer, Departmetn of Public Health and Caring Sciences, Uppsala University
When:
13:00-14.30
Where:A11:220b, opposite Boström, BMC


2016-03-14
Ethical issues in preconception genetic screening: Halft time control
Amal Matar, PhD student, CRB
When: 13:00-14.30
Where: Boströmrummet, BMC


2016-03-21
Philosophical investigation of brain simulation
Michele Farisco, PhD student, CRB
When: 13:00-14.30
Where: Boströmrummet, BMC


2016-04-11
Ethical aspects in intensive care unit research
Hannaleena Karjalainen, Kuopio University Hospital and University of Eastern Finland
When: 13:00-14.30
Where: Boströmrummet, BMC


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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.

CODEX


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.