Centre for Research Ethics & Bioethics (CRB)

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Julia Inthorn on The Ethics Blog: Genetic compatibility as a new dimension of partnership?

[2014-04-09] Preconception genetic carrier tests can inform a person if he/she is carrier of a recessive disease.

Julia InthornIn case the partner is also a carrier of the same disease, the couple has an increased risk (usually a 1 in 4 risk) to have a child with this disease. Current research in genetics works on developing tests for up to 600 of such recessive inherited diseases. Couples can use this test when planning a pregnancy and check if they are both carriers of the same disease.


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.


Science communication in "knowledge landscapes"

[2014-03-06] Researchers and scientists need to communicate new knowledge to society.

Anna Lydia SvalastogIn a recent paper, Anna Lydia Svalastog togehter withJoachim 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.


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.

Jennifer VibergHow incidental findings, complex geneticrisk 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


EU data protection legislation threatens rare disease research

Research on rare diseases requires international collaboration and movement of samples and data across national borders.

Deborah MascalzoniCurrently 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.


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Evaluation of ethical isseus have to be made in a systematic and informed manner, based on sound research and scholarship

Biobank perspectives - ethics and law

[2014-04-22] The second Biobank perspectives newsletter is here, packed with current issues in biobank ethics and law from the Centre for Research Ethics & Bioethics (CRB) and BBMRI.se.

Biobank perspectives: Current issues in biobank ethics and lawIn this issue you can read more about a new international research collaboration on genetic risk information. We give you an update on the new Swedish law for registers for research on the health implications of heritage and environment that makes it possible for the LifeGene project to continue.

The EU Data protection regulation is on the way and we give you some information on the legislative process. We also present recent publications from our group.

ETHICS BLOG: The claim of thoughtfulness

[2014-04-16] Philosophy has an aura of pretentiousness. Philosophers seem to make such ambitious claims about the essence of everything. About morality, about mind, about language… usually without doing any empirical research!

Pär SegerdahlFrom where do they derive their claims? Are they sitting in armchairs just awaiting “truths” from out of nowhere? Is philosophy a form of “easy science” where one goes straight to the results without doing the research work needed to substantiate them? More

Pär Segerdahl is Associate Professor of Philosophy and editor of the Ethics Blog.

Read his and other texts on the the Ethics Blog.

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 Mariano Sigman explore the possibilities of mind reading using fMRI and trace conditioning. Today we can measure brain states even when a person appears unconscious.

Kathinka EversPatterns of activity in the brain can suggests the presence of consciousness even when there appears to be none. Modern technology also allows us to communicate with patients who can't move or speak.

But these technologies can do more than help patients. They can also be used to access subjective awareness in adults an infants. 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.

Read article in Consciousness and Cognition: Possibilities and limits of mind-reading: A neurophilosophical perspective

Neuroscientific explanations in courtrooms

[2014-03-20] The defence in a recent Italian case used 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.

Michele FariscoIn 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.

In the article he suggests a strategy to involve meta-scientific experts to help judges and juries to understand the limitations of this kind of evidence. Experts should also help courts contextualize evidence and help them understand how it can affect human identity and behaviour.

Read article in AJOB Neuroscience: In Need of Meta-Scientific Experts?

 

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Calendar

2014-04-28
Joint discussion: Autonomy from philosophical and empirical perspectives
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-05-12
Risks and benefits of genetic identification
Mats G. Hansson, Professor of Biomedical Ethics, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-05-19
Exploring a speechless world
Michele Farisco, PhD, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-05-26
The mind-body problem in neuroscience
Karl Sallin, PhD student, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-06-02
Ethical particularism and bioethics
Ulrik Kihlbom, Senior Lecturer, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


More activities and event
calendar >

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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.


Updated Biobank and Registry Ethics Report from CRB

Our compiliation of biobank and registry ethics publications has been updated.


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.