Centre for Research Ethics & Bioethics (CRB)

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Biobank Perspectives out!

[2015-02-25] Interested in biobank and registry research? Check out the latest issue of our newsletter Biobank Perspectives: Current issues in biobank ethics and law.

Anna-Sara LindFind out what Anna-Sara Lind has to say about data protection regulation.

Read about Pär Segerdahl's book with collections of texts and reflections from the Ethics Blog and an anthology about the regulation of biobank research edited by Deborah Mascalzoni.

You will also find out more about a new type of online research ethics training for medicine & the life sciences.

Read it: HTML or pdf


Epigenetics as the meeting point between nature and nurture: 19-20 March 2015

[2015-02-16] We need to know if epigenetic changes remain within one generation or can extend across generations. To what extent are changes reversible? Can we be epigenetically proactive?

Welcome to a multidisciplinary workshop on Epigenetics to explore the potential for multidisciplinary research initiatives!

Read more on the workshop website, like us on Facebook or join our e-mail list for more information.


New book thinks about ethics

[2014-12-16] Why would a cancer patient agree to test a drug that might not be effective on their own disease? And are researchers responsible if their research can be used to develop biological weapons? A new book provides some food for thought.

Pär SegerdahlJust the other day, Pär Segerdahl published a book called Thinking about ethics with a collection of texts and reflections from the Ethics Blog. The texts might not provide the answers to all the questions posed above, but they should at least give you some ideas.


Ethical rounds in psychiatric care

[2014-12-01] Is there a way to use ethical rounds to improve the ethical climate in health care? Two outpatient psychiatry clinics in Uppsala have been part of a study to find out if it is possible.

Marit SilénIt turns out that the staff appreciated participating in the ethical rounds and saw them as an important forum for discussing ethical questions. According to Marit Silén, who did the intervention as part of her postdoc at CRB, there weren’t any measurable differences in how staff perceive that ethical issue are handled in the workplace - the ethical climate -  before and after the intervention.


Online research ethics for scientists

[2014-11-24] There is growing concern about research integrity. Scientists need skills to manage the ethical aspects of their research. But they also need formal training in research ethics to meet demands from universities and funding agencies. But how can we make this training available and affordable? CRB has accepted the challenge and are now testing an online training programme that will be available next year.

Stefan ErikssonStefan Eriksson, Associate Professor of Research Ethics, is currently developing online training for medicine and the life sciences. At the moment, students from Egypt, Singapore, Germany, Italy and Sweden are testing the course to make sure it works for students with different professions, seniority and nationality. The idea is for around 15 students with different backgrounds to meet and discuss and perhaps not only learn from the literature and lectures, but also from each other.


Consumer genomics: changes on the horizon

[2014-10-28] The market for direct-to-consumer genetic testing has developed over the past decade. And the market for these products keeps changing.

Heidi C. HowardThe European Parliament recently proposed a new Regulation for in vitro diagnostic (IVD) medical devices. According to a paper in Science by Louiza Kalokairinou, Heidi Carmen Howard and Pascal Borry this could have drastic effects on the genetic test market in the future.


Brain simulation raises questions

[2014-10-22] What does it mean to simulate the human brain? Why is it important to do so? And is it even possible to simulate the brain separately from the body it exists in? These questions are discussed in a new paper published in the scientific journal Neuron today.

Simulating the brain means modeling it on a computer. But in real life, brains don’t exist in isolation. The brain is a complex and adaptive system that is seated within our bodies and entangled with all the other adaptive systems inside us that together make up a whole person. And the fact that the brain is a brain inside our bodies is something we can’t ignore when we attempt to simulate it realistically.

Kathinka EversToday, two Human Brain Project (HBP) researchers, Kathinka Evers, philosopher at the Centre for Research Ethics and Bioethics at Uppsala University and Yadin Dudal, neuroscientist at the Weizmann Institute of Science, publish a paper in Neuron that discusses the questions raised by brain simulations within and beyond the EU flagship project HBP.


Culture and ethics: current discussions

[2014-10-16] Most of us have heard about the divisions between nature and culture and science and ethics. But how could we challenge them? And what happens if we think about them again? In a recent article, members of the Network on Culture, Health and Bioethics take a second look.

Anna Lydia SvalastogIn a recent article in the New Zealand Online Journal of Interdisciplinary Studies they give a comprehensive summary of the discussions that are going on in different disciplines.

They point out research on Indigenous people as a special focus of discussion. Anna Lydia Svalastog from the Centre for Research Ethics & Bioethics (CRB) is one of the authors. According to her, work on indigenous populations highlight the cultural specificity of ethics regulations.


Talking about death with dying children

[2014-10-09] Open and honest communication is important in palliative care, but what about families? When is the best time to talk to your child about dying? And how should you talk about death?

Li JalmsellA group of researchers have studied how parents with children dying from cancer communicated with their child about death. The results show that the child, not the parent, was often the one who initiated conversations about death. Parents often used fairy tales as a theme for these talks. Regardless of how old the child was.

Li Jalmsell is one of the authors. She is a PhD Student at CRB but also a medical doctor and has worked with cancer patients for many years. According to her, the study suggests that there are some simple means that could help families talk about dying.


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Meet a PhD Student: Michele Farisco

Data protection update – one step forward, two steps back?

[2015-02-24] Anna-Sara LindThe new European data protection regulation has moved through the administrative and political process last year. This spring, negotiations continue within the Council. Here, Anna-Sara Lind comments the process.

This autumn, the Council of the European Member States met continuously to discuss the European Commission's suggestions for a new Data protection regulation. The regulation will replace the old directive. The debate has centered on matters that have great implications for biobanking and research. The December meetings focused applying the regulation in the public sector and how to administer and and process cases across borders. The discussions the chapter dealing with special categories and processing health care and research (IX) came to a close and the Council summarized the outcome in an internal working paper. Read more

Teen mental health: Adults don't understand

[2015-02-19] Have you ever heard a teenager say you don't understand what he or she feels? It is probably true. A recent study shows that adults underestimate how feeling worried, sad or annoyed can impact a teenager’s mental health.  

Terry FlynnIt looks like there might be systematic differences in how adults and adolescents value different health states. A group of health economists and paediatricians recently published the results of an online survey in Health Economics.

They are able to show that adults put less weight on feelings that are related to impairments in mental health, like being worried, sad or annoyed. Instead, they put more weight on moderate to severe levels of pain than the adolescents did.

Terry Flynn is a health economist at the Centre for Research Ethics & Bioethics ( (CRB) and one of the researchers responsible for the study. According to him, the results highlight some age-related differences that perhaps could have some impact on how we divide resources.

"It might be that grown-ups forget what it is like to be a teenager, but there is also a policy issue here: Maybe our health care systems don't devote enough resources to teen mental health", says Terry Flynn. Read more

Epigenetics as the meeting point between nature and nurture: Workshop Uppsala 19-20 March 2015

Ethics lunches for scientists and engineers

[2015-01-26] This spring, the disciplinary domain for science and technology (TekNat), DRI (den reflekterande ingenjören) and UTN (Uppsala teknolog- och naturvetarkår) are hosting a series of lunch seminars focusing on ethics.

Jessica Nihlén FahlquistJessica Nihlén Fahlquist from CRB and Per Sandin from SLU will talk about what ethics is, why we should care about nature, the difference between your fellowmen and professionals, and whether sacrificing one person for the good of society is reasonable from an ethical point of view.

Note: The seminars will be held in Swedish Read more and register here

Open MIND – access to the latest work in philosophy, cognition and neuroscience

[2015-01-22] An open access collection of the latest work in philosophy, cognitive science and neuroscience is now available online. Kathinka Evers from the Centre for Research Ethics and Bioethics (CRB) is one of the authors.

Kathinka EversIn her contribution, Kathinka Evers proposes the possibility of being epigenetically proactive. According to her, that means adapting our social structures to benefit, influence and interact with the neuronal architecture of our brains.

The other topics range from the foundations of conscious thought processes to perception, consciousness, and ethics. The Frankfurt-based neurophysiologist Wolf Singer discusses the current status of the search for the neural correlates of consciousness and reviews the methods, including imaging techniques, used in this area of research. Daniel Dennett, one of the leading philosophers of mind, based at Tufts University, explains why consciousness might be an illusion. And Heiko Hecht, an experimental psychologist at Johannes Gutenberg University Mainz, raises new questions about what exactly constitutes an illusion.

The collection is available online at http://www.open-mind.net to anyone interested. It will also be published as a 2 000-page book. Read more

Regulating biobank research: new book

[2015-02-24] Biobank research and genomic information are changing the way we look at health and medicine. So how can we regulate it? A recent book published by Springer shows us how the regulatory systems work and raises a critical voice.

Deborah MascalzoniDeborah Mascalzoni is Senior Researcher at CRB and the editor of Ethics, Law and Governance of Biobanking that was recently published by Springer. According to her, we can't keep clinical applications and research separate anymore.

But when we start blurring the lines we start challenging existing regulations and ethical frameworks. The book gives an overview of the existing regulatory landscape for biobank research in the Western world. But it also raises some critique of how regulations and ethical frameworks are developed and work.

"There are many questions that still need resolving, for example how researchers should share samples and data across borders. But we also need to figure out some of the basics. Like how we design an ethical informed consent. These are some of the questions that this book addresses", Deborah Mascalzoni explains. Read more

Who calls Swedish Health Care Direct '1177'?

[2015-01-13] For some time now, all Swedish regions have been connected to the telenursing service Swedish Healthcare Direct (SHD), or ‘1177'. But does that mean we have equitable access to health care? Perhaps not. A recent study shows that both language and gender influences who uses the service.

Anna T. HöglundA recent study of authentic calls made to '1177' published in Clinical Nursing Studies shows that the most common caller is a young woman who is fluent in Swedish. According to the authors, it is important that we make sure that telenursing doesn't become a service only for them.

One of the questions they posed was whether men and women are given the same advice. The analysis shows that men, and especially fathers, received more referrals to general practitioners than women. This is interesting, especially since most of the calls about children were made by women. Read more

Biobanking for rare diseases

[2014-12-17] Rare diseases are uncommon, and often severe, disabling and life threatening. There is a need for research to help these patients get treatment.

Mats G. HanssonBut what are the current trends in biobanking for rare diseases? Mats G. Hansson is part of group of researchers that recently published a review on the current trends in biobanking for rare diseases in the Journal of Biorepository Science for Applied Medicine

Here is a video of what Hugh JS Dawkins and Caroline Graham, two of the authors from the Office of Population Health Genomics, Western Australian Department of Health, have to say about the article:

ETHICS BLOG: The need of a bird’s-eye view

[2015-02-25] In the previous blog post I wrote about the tendency in today’s research to build common research platforms where data are stored and made open: available for future research, meta-analysis and critical scrutiny of published research.

Pär SegerdahlThe tendency is supported at EU level, by bodies responsible for research. Simultaneously, it is obstructed at EU level, by other bodies working with data protection.

The same hopeless conflict can be seen in Sweden, where the Swedish Data Inspection Board time and again stops such efforts or criticizes suggestions for how to regulate them. This month the Data Inspection Board criticized a proposed law on research databases. Read more

Pär Segerdahl writes for the Ethics Blog. Read his and other texts on the the Ethics Blog.

 

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Calendar

2015-03-03
Varför ska vi bry oss om naturen?
TekNat lunch seminar with Per Sandin from SLU
In Swedish, registration required
When: 12:15-13:00
Where: Häggsalen, Ångströmlaboratoriet


2015-03-09
"Kappaseminarium": Factors associated with participation in phase 1 and phase 3 oncology trials
Tove Godskesen, PhD student, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2015-03-16
Ethical conflicts in Swedish mental health law

Moa Kindström Dahlin, Researcher, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2015-03-19--20
Epigenetics as the meeting point between nature and nurture
Save the date for a workshop on Epigenetics aiming to explore the potential for multidisciplinary research initiatives


2015-03-23
Dynamic consent: report from a quantitative study
Deborah Mascalzoni, Senior researcher, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2015-04-13
"Kappa-seminarium" half time: Cardiovascular risk communication in primary care
Sofia Lavén, PhD student, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2015-04-14
Vad är den etiska skillnaden mellan medmänniskan och yrkesmänniskan?
TekNat lunch seminar with Jessica Nihlén Fahlquist from CRB
In Swedish, registration required
When: 12:15-13:00
Where: Häggsalen, Ångströmlaboratoriet


More activities and event
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More

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. Number 3 was published in September 2014.


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.