Centre for Research Ethics & Bioethics (CRB)

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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)


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 press release from Uppsala University >


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.
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The Ethics Blog


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

Deborah Mascalzoni


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


BBMRI-LPC, photo: Eric Bongcam-Rudloff


The Ethics Blog >> Morality as a problem

[2013-04-09] Friedrich Nietzsche made this enigmatic remark about moral philosophy:

“In all ‘science of morals’ so far one thing was lacking, strange as it may sound: the problem of morality itself; what was lacking was any suspicion that there was something problematic here.”

What did Nietzsche mean? More

Read all of Pär Segerdahl's post on the ethics blog >



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



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.



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Calendar

2013-05-03
Half-time seminar: Li Jalmsell - Pediatric palliative medicine - End of life care of children dying from malignancies
Li Jalmsell, PhD Student, presents her thesis
When: 13:00-16:00
Where: BMC, Scheelerummet


2013-05-06
Technological innovation in healthcare and healthcare ethics: a built-in model
Sonia Mansour Robaey, Assistant professor, Faculty of Philosophy, Saint Paul University, Ottawa
When: 10:30-12:00
Where: BMC, Boströmrummet


2013-05-13
Sex differentiation, gender, law and ethics
10:30-12:00: Science and proven experience and ethics obligations: Milton Diamond, MD
12:00-13:00: Lunch break
13:00-14:30 Counseling adults and parents of children with gender identity questions: Dr. Constance Brinton-Diamond,
When: 10:30-12:00
Where: BMC, Boströmrummet


2013-05-16
Doing research in Bioethics: Challenges and methodology
Workshop for PhD students and young researchers doing Bioethics
When: 10:00-17:00
Where: BMC, Boströmrummet
Register to ulrik.kihlbom@crb.uu.se by April 15


2013-05-20
The dynamic consent in the project CHRIS
Deborah Mascalzoni, Researcher, CRB
When: 10:30-12:00
Where: BMC, Boströmrummet


2013-05-27
The Doping Crisis in Elite Sport and the Responsibility of Sports Physicians
Ashkan Atry, PhD Student, CRB
When: 10:30-12:00
Where: BMC, Boströmrummet


2013-06-03
Presentation of the Human Brain Project
Kathinka Evers, Associate Professor, CRB, Sten Grillner, Professor, Karolinska Institutet & Jeanette Hellgren Kotaleski, Professor, Royal Institute of Technology (KTH)
When: 10:30-12:00
Where: BMC, B10:2


2013-08-19
Beyond the individual – doping, moral responsibility and agency (thesis seminar)
Ashkan Atry, PhD Student, CRB
When: 10:30-12:00
Where: BMC


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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. Read more


Rules and Guidelines

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