Centre for Research Ethics & Bioethics (CRB)

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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.


Karl Sallin will study pervasive refusal syndrome as a disorder of conciousness

[2014-01-24] Despite severe symptoms apparently affecting consciousness,pervasive refusal syndrome has received little attention from neuroscience.

Karl SallinKarl Sallin has initiated a collaboration between clinicians and neuroscientists in order to study PRS as a disorder of consciousness.


Pretend play can facilitate treatment and improve quality of life for children with cancer

[2014-01-15 ] In health care, and particularly in children’s cancer care, it is difficult for children to gain a sense of understanding, control and involvement. This may cause fear and discomfort.

Mats HanssonAn international collaboration between Uppsala University, Uppsala University Hospital, Case Western Reserve University in Cleveland and the University of Hamburg will examine if pretend play have a positive effect on children aged 3-10 years, and their integration in the treatment and decision-making processes regarding their cancer.


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

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?

Trustworthiness requires more than guidelines and review

[2014-03-14] Research ethics has developed into an extra legal regulatory system. Guidelines serve as steering documents, committees oversee and consent procedures are formal.

This is often justified with reference topast atrocities. In a recent article in Research Ethics, Linus Johnsson, Stefan Eriksson, Gert Helgesson and Mats G. Hansson call this 'institutionalized distrust' and claim that this approach has some limitations.

Linus JohnssonFor one, we can't justify regulatory systems with past horrors unless the distrust itself is a necessary or efficient means to prevent future atrociousness. According to the authors, this distrust is a potential threat to researchers moral competence and integrity because it encourages a blinkered view of ethical issues.

Read article in Research Ethics: Making researchers moral: Why trustworthiness requires more than ethics guidelines and review

Read Pär Segerdahl's post about the article on the Ethics Blog: Research ethics as moral assurance system

CRB coordinates unique research collaboration on genetic risk information

The Swedish Foundation for Humanities and Social Sciences (RJ) has granted BiobankCRB and research partners SEK 35,9 million to conduct research on how to manage and handle genetic risk information.

Health care systems, legislators and society at large are unprepared for the management of complex risk information. CRB will coordinate a unique international multidisciplinary research collaboration. Philosophical, historical and sociocultural analysis will be linked to empirical studies of risk perception. Read more

 

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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
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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

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.