Centre for Research Ethics & Bioethics (CRB)

Recent

Guideline for sharing specimens and data receives IRDiRC recommendation

[2015-08-25] The International Charter of principles for sharing bio-specimens and data has received a recommendation from the International Rare Diseases Research Consortium IRDiRC.

IRDiC recommendedThe Charter is part of CRB's work with the ethical, legal and social issues (ELSI) in the RD-Connect platform.


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.


THE ETHICS BLOG: 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 Moa Kindström Dahlindo, 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.


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.

Mats G. HanssonIn the June issue of Biobank Perspectives, Mats G. Hansson writes that trust-based consent (a modified version of broad consent) has proven successful both for information to participants and for providing a useful resource for important research.


Swedish research database legislation: update

[2015-06-02] Research databases like the Swedish Life Gene project have proven problematic and the Anna Sara Lind is Associate Professor of Public Law and Editor of Biobank PerspectivesSwedish 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.

Read Anna-Sara Lind's update in Biobank Perspectives


Biobank 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.


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.


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Online training: Research ethics for medicine and the life sciences

Bioethics scholars recommend broad consent

[2015-08-27] Researchers ask for different types of consent when they collect samples for future research. This creates confusion about what research is permitted. But it also causes unintentional constraints on future research and sometimes leads research proceeding without consent.

Mats G. HanssonAn international working group of bioethics scholars recently published a target article in the American Journal of Bioethics. They come to the conclusion that Broad Consent is the preferred solution for balancing patient interest related both to protection of privacy, respect for autonomy and the need to develop and improve medical treatment. The article is the outcome of a workshop of the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens arranged by the US National Institutes of Health (NIH).

Read article: Broad Consent for Research With Biological Samples: Workshop Conclusions

Mats G. Hansson is one of the scholars behind the article. He has followed the discussions on informed consent for the better part of his career and recently wrote about a model for broad consent called trust based consent for our newsletter Biobank Perspectives: Trust based consent looks promising

Patients don’t understand the purpose of clinical drug trials

[2015-08-17] Clinical trials are an important part of cancer research. Future patients depend on the severely ill to test drugs to improve treatment. But in her dissertation from Uppsala University, Tove Godskesen shows that some of these patients have a limited understanding of the purpose of the studies they enroll in.

Tove GodskesenOn August 28, Tove Godskesen will defend her PhD thesis where she has looked at the reasons why cancer patients participate in clinical drug trials and whether they understand the information they have received. She shows that most patients have been adequately informed, are satisfied with their participation and able to recommend others to enroll in studies. But a small group of the patients, who also are the most ill, that had trouble understanding what participation in a drug trial entails. According to Tove Godskesen this is an ethical dilemma for clinical research that risks diluting the practice of informed consent. Read more

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

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

THE ETHICS BLOG: Ethics research keeps ethical practices alive (new dissertation)

[2015-08-25] I have in two posts complained about a tendency of ethical practices to begin to idle, as if they were ends in themselves.

Pär SegerdahlA risk with the tendency is that bioethics is discredited and attacked as no more than an unhappy hindrance to novel research.

Like when Steven Pinker recently wrote that the primary moral goal for bioethics today should be: Get out of the way!But there is a way to go: self-scrutinizing ethics research.

Bioethics is often misunderstood as merely a fixed and finished framework of ethical rules, principles and review systems: as a cumbersome bureaucracy. I guess that is how Pinker understands it. Read entire post >

Want to hear more of what Pär Segerdahl 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: 13:00-15:00
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.