Centre for Research Ethics & Bioethics (CRB)

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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 >


Research and confidentiality

[2012-01-17] The first in a series of three programmes in a radio series on 'research to be quite about' deals with confidentiality and contains interviews with, among others, Mats G. Hansson and Elisabeth Rynning and on research, confidentiality and legislation.
Read more and listen to the programme (in Swedish) >


Debate on the Swedish Data Inspection Board's decision to stop LifeGene

[2011-12-22] The Swedish Data Inspection Board recently stopped LifeGene, a large biobank at Karolinska Institutet. In the Swedish daily paper Svenska Dagbladet, eight professors describe the decision as "controversial and narrow minded". The write that politicians need to take their responsibility and give the Data Inspection Board better guidance through new legislation.  

Follow the debate in Swedish on SvD Brännpunkt >

The Ethics Blog discusses this in English: The Swedish Data Inspection Board stops large biobank

Are the Sámi just like everyone else?

A paper from Anna Lydia Svalastog looks at the encounter between the Christian missionary religion and the Sámi ethnic religion. The paper is published in the symposium report Uppsala mitt i Sápmi.


Brainstorm features profile of Kathinka Evers

[2011-12-07] The latest issue of Brainstorm features a profile of CRB neuroethics researcher Kathinka Evers.

The Brainstorm Newsletter is published by the Canadian Neuroethics Interest Group (CNIG). You will find more information about the group and Newsletter on the CNIG website >


More news >




The Ethics Blog >> Research before health care

[2012-05-10] Last week I blogged about the unique status that personal data have in science. Researchers are not interested in the persons behind the data and they have no intention of returning to them; an intention that most other personal data collectors have.

In an age of increasing integrity threats, it is uplifting that biobanks and research registers function like depersonalized scientific spaces where our data can orbit between research projects without tendency to return to us and disturb us.

Scientific aims disentangle us from our data.

Simultaneously with my blogging on this topic, Mats G. Hansson here at CRB wrote a letter to Nature on almost the same subject.

Read Pär Segerdahl's post on the ethics blog >



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.

According to the international panel, the centre's publications “range among the top-quality in the field” and they were impressed with the creative research environment.

- We are very happy with the good grade, Mats G. Hansson says but, he continues, we decided to use this opportunity to start a process to develop our research even further. The panel suggested efforts could be developed into larger, focused research themes, and we decided to try and do that.

The panel also encouraged CRB to become more visible, a suggestion that has started a very interesting and creative process:

-The Ethics Blog is a result of the work we have done since the evaluation. We are also looking at improving our website structure and content. And we have decided to become more visible in the public debate and strengthen our dissemination and international collaboration activities, Mats G. Hansson says.

Evaluation: facts
The evaluation (Quality and Renewal 2011) was carried out by international expert panels. The aim was to identify strong areas and successful groups at Uppsala University, emerging science and promising initiative for future research.

The panel used a five-grade evaluation scale (1-5), with “world-leading level” and “internationally high standard,” as the top two. CRB’s top quality evaluation (grade 1) puts the centre in the highest score.



HandsOn: Biobanks

Interactive conference on biobanking

Welcome to an interactive conference on biobanks! Meet biobank researchers and industry, listen to interesting talks and participate in idea labs and workshops. Topics range from the latest technology through ethical challenges and legislation to outcome in clinical praxis and drug development. The conference is arranged by BBMRI.se on 20-21 September 2012.

HandsOn: Biobanks on Facebook HandsOn: Biobanks on Facebook >>

In conjunction with this conference, P3G, ISBER, BioSHaRE.EU,  ENGAGE, BBMRI.se and ESBB are hosting an international biobanking summit in Uppsala.

>> HandsOn: Biboanks 20-21/9 2012

>> International Biobanking Summit: Future Directions 19/9 2012



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CRB's e-newsletter is published two to four times a year. Are you intetested in receiving news from us? Join our list >

Read our newsletter (February 2011) >



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Calendar

2012-05-21
Biobanks and medical registries
Mats G. Hansson, Professor of Biomedical Ethics, CRB
When: 10:30-12:00
Where: BMC, Boströmrummet


2012-05-28
Risk communication in primary care
Sofia Lavén, MD, CRB
When: 10:30-12:00
Where: BMC, Boströmrummet


2012-06-04
Human enhancement in the light of ethical values inherent in the medical sciences
Ashkan Atry, PhD Student, CRB
When: 10:30-12:00
Where: BMC, Boströmrummet


2012-09-20--21
HandsOn: Biobanks
Welcome to an interactive conference on biobanks! Meet biobank researchers and industry, listen to interesting talks and participate in idea labs and workshops. Topics range from the latest technology through ethical challenges and legislation to outcome in clinical praxis and drug development.

Save the date: 20-21 September 2012. Read more >

More activities and event
calendar >

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Associate member of EACME

CRB is an associate member of the European Association of Centres of Medical Ethics (EACME)

CODEX - 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.