Centre for Research Ethics & Bioethics (CRB)

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

[2014-12-16] 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.


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 lecturer: Jessica Nihlén Fahlquist

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 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

[2015-01-13] 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. But there is also an underlying ciritique

"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:

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.

In the book, Pär Segerdahl invites you on a journey through some of the issues that the Ethics Blog has dealt with in the recent years. He writes about researchers’ responsibilities, about participating in research and about information and integrity. But he also writes about ethics as such: What is it today, really? In this book you can read about dataprotection and population based biobank studies. But you can also read about apes writing articles and about the risk with knowing the risk. More

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

ETHICS BLOG: Rare diseases need international research infrastructure

[2015-01-20] There are a few thousand diseases that you never heard the name of. They affect so few people and have no names in the common language.

Pär SegerdahlThese diseases are usually called rare diseases (or orphan diseases). They often (but not always) have genetic origin. They often affect children, are disabling and can even be life-threatening, and in many cases organ systems in the body degenerate.

Because the diseases are rare, they are difficult for doctors to diagnose. Even if one manages to make a diagnosis, treatments are often lacking. Read more

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

 

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Calendar

2015-02-02
Methodology discussion: how to use of Best-Worst Scaling (BWS) for selection of attributes and in combination with a Discrete Choice Experiment (DCE)
Jennifer Viberg, CRB, Sophie Langenskiöld, Department of Public Health and Caring Sciences and Terry Flynn, CRB
When: 10:00-11:30 (new time)
Where: BMC, Boströmrummet


2015-02-09
Multiscale models in neurosciences: Bringing together a fragmented field

Omar Gutierrez Arenas, Postdoc Researcher CRB/HBP
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2015-02-10
Vad är etik och varför ska man bry sig?
TekNat lunch seminar with Jessica Nihlén Fahlquist from CRB
In Swedish, registration required
When: 12:15-13:00
Where: Häggsalen, Ångströmlaboratoriet


2015-02-16
Ethical conflicts in Swedish mental health law

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


2015-02-23
"Kappaseminarium" 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: BMC, Boströmrummet


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


2015-03-02
Next generation sequencing: what are the ethical and social implications?
Richard Rosenquist Brandell, Professor, Department of immunology, genetics and pathology (IGP), Uppsala University & Heidi C. Howard, Researcher, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2015-03-09
"Kappaseminarium": Factors associated with participation in phase1 and phase 3 oncology trials
Tove Godskesen, PhD student, 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


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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. 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.