Centre for Research Ethics & Bioethics (CRB)

Recent

Funding for caring science

[2015-06-29] The disciplinary domain for medicine and Anna T. Höglundpharmacy have awarded Anna T. Höglund 200 000 SEK to continue Mona Pettersson’s PhD project on DNR-orders (Do Not Resuscitate) in oncology care.


Biboank perspectives out!

[2015-06-02] The latest issue of our newsletter on current issues in biobank ethics and law is now out!


ETHICS BLOG: Where is consciousness?

[2015-05-26] Would it be possible to use brain imaging techniques to detect consciousness and then Michele Farisco“read” directly in people’s brains what they want or do not want? Could one, for example, ask a severely brain injured patient for consent to some treatment, and then obtain an answer through a brain scan?


ETHICS BLOG: Online research ethics: A pedagogic challenge

[2015-05-19] Researchers, scientists and professionals Stefan Erikssonwho are somehow involved in research, need to develop an ability to detect ethical problems. But we also need to learn how to do something about them. – How can we learn?


ETHICS BLOG: Risks are not just about numbers

[2015-05-12] On a daily basis, we are informed about risks. The media tell us that obesity Jessica Nihlén Fahlquistincreases the risk of cardiovascular diseases and that we can reduce the risk of Alzheimers by eating the right kind of food. We are confronted with the potential danger of nanoparticles and mobile phone radiation. Not to mention the never ending discussion about nuclear power. Some news are more serious than others, but we cannot avoid risk information as such.


Contrasts between animals and humans

[2015-04-27] Philosophers often use the contrast between animals and humans as a rhetorical figure. It is easy to assume that this is because they are anthropocentric. But is this really why?

Pär SegerdahlPär Segerdahl has examined the tendency in philosophy to portray humans as positive beings that “have” some important capacity (like reason), while animals are portrayed as negative beings that “lack” what humans have. In a recent paper he tries to demonstrate that this schematic plus/minus opposition does not necessarily stem from anthropocentrism.


Whole genome sequencing of newborns

[2015-04-23] It is faster and cheaper than ever to sequence a person’s entire genome. Perhaps genomic information could be useful for health care? Then it might be a good idea to sequence the whole population just after birth. Or is it?

Heidi C. HowardNewborns are already being screened for some conditions that require treatment from infancy, so perhaps whole genome sequencing of newborns is the next step? And if we think it is a good idea, we need to ask ourselves if we should use our publicly funded health care systems to pay for it.


ETHICS BLOG: Neuroethics: new wine in old bottles?

[2015-04-07] Neuroscience is increasingly raising philosophical, ethical, legal and social problems Michele Fariscoconcerning old issues which are now approached in a new way: consciousness, freedom, responsibility and self are today investigated in a new light by the so called neuroethics.

Neuroethics was conceived as a field deserving its own name at the beginning of the 21st century. Yet philosophy is much older, and its interest in “neuroethical” issues can be traced back to its very origins.

Find out what Michele Farisco and other writers have to say on the the Ethics Blog.


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Online training: Research ethics for medicine and the life sciences

Information and law in transition

[2015-06-02] New information and communication technologies have created exciting new possibilities for connecting individuals across borders and continents but also significant legal, ethical and political concerns.

Anna Sara Lind is Associate Professor of Public Law and Editor of Biobank PerspectivesA number of prominent scholars from Europe and North America analyze the developments of information and law from their respective perspectives in the new book Information and Law in Transition. New information and communication technologies have made it possible to create large registries and databases with the potential to lead to effective cross-border law enforcement, foster important new research as well as unwarranted mapping of individual persons' private life. At the same time, new needs of regulating privacy and Internet never cease to emerge. The process of negotiating a Data protection regulation in the European Union is one example illustrating this. Read more

Meet an editor: Pär Segerdahl

Trust based consent looks promising

[2015-06-02] Finding a model for informed consent that protects the integrity and interests of participants, future patients and researchers isn't easy. Recently, a group in Milano tested a trust based consent that I think looks promising.

Mats G. HanssonThe European Institute of Oncology (IEO) in Milano has designed and tested a new information and consent procedure for its tissue bank, the IEO Biobank and Biomolecular Resource Infrastructure (IBBRI).

This new model of trust-based consent is a modified version of broad consent that has proven successful both for information to participants and for providing a useful resource for important research. Read more

Swedish research database legislation: update

[2015-06-02] Research databases like the Swedish Life Gene project have proven problematic and the Swedish Government has tried to find solutions for collections of samples and data for 'future research', a purpose that is not considered specific enough by the Data Inspection Board.

Anna Sara Lind is Associate Professor of Public Law and Editor of Biobank Perspectives In 2013, a temporary Act on research registries known as the "LifeGene Act" was enacted in order to legalize research conducted on registries that higher education institutions are responsible for. The act will be valid until 31 December 2015.

This spring, the Act was reviewed and analysed. On March 24 this year, the Ministry of Education and Research published a memo where they suggested that the temporary Act should be valid until 31 December 2017. Read more

Genetic risk: do people want to know?

[2015-06-02] Biobank studies and genetic research aim at finding out the relationship between our genetic code and our diseases. Sometimes researchers find unexpected information about a participant. Asking people if they want this kind of risk information returned to them seems like a good idea. But is it fair to leave them to make that decision?

Jennifer VibergEthicists, regulations and researchers have struggled with whether or not to disclose incidental findings. There has been a shift in the discussion on incidental findings. In recent years, the focus has shifted from discussing what kind of information researchers should give participants, to asking participants what they want to know. In a recent paper in Bioethics, researchers from the Centre for Research Ethics & Bioethics (CRB) claim that shifting the responsibility from researcher to participant comes with a number of problems. Read more

ETIKBLOGGEN: All you need is law? The ethics of legal scholarship

[2015-06-09] Working as a lawyer in a multidisciplinary centre for research ethics and bioethics, as I do, often brings up to date questions regarding the relationship between law and ethics. What kind of ethical competence does academic lawyers need, and what kind of ethical challenges do we face? I will try to address some aspects of these challenges.

Moa Kindström DahlinFirst, I must confess. I am a believer, a believer of law.

That does not mean that I automatically like all regulations, it is just that I cannot see a better way to run the world, but through a common system of legal norms. Believing in law means that I accept living in a different universe. I know the non-lawyers cannot always see my universe, but I see it clearly, and I believe in it. You’ll have to trust me – and all other lawyers – through training and education, we see this parallel universe and believe in it. Read more

Want to hear more of what Moa Kindström Dahlin and colleagues have to say? Visit the Ethics Blog!

 

 

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Calendar

2015-08-28
Public dissertation defence: Participation in oncology trials
Tove Godskesen, RN, PhD Student
When: 09:15 
Where: BMC, A1:107a


2015-09-14
Half time: How should incidental findings in biobank research and genome sequencing studies be handled?
Jennifer Viberg, PhD Student, CRB
When: 13:00-14.30
Where: Boströmrummet, BMC


2015-09-21
Behavioral effects in antibiotics use
Linnea Wickström Östervall, Researcher, CRB
When: 13:00-14.30
Where: Boströmrummet, BMC


2015-09-25
Public dissertation defence: Palliative care of children with cancer
Li Jalmsell, PhD Student, CRB
When: 09:00
Where: BMC, A1:A111a


2015-09-28
Swedish Guardianship Legislation – Progressive and Lagging Behind
Torbjörn Odlöw, Senior Lecturer, Department of Law, University of Gothenburg, School of Business, Ekonomics and Law
When: 13:00-14.30
Where: Boströmrummet, BMC


2015-10-19
Preliminary data: pretend play
Sara Holm, Researcher, Anna T. Höglund, Associate Professor and Lena Ring, Adjunct Professor, CRB
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.