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.


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.


Research on patients with disorders of consciousness

[2014-10-13] There are a number of disorders of consciousness where patients are unable to communicate. There is a need for research on these patients to improve treatment and diagnosis. But since these patients don't talk in the common sense of the word, there are a number of ethical and legal problems attached to this research.

Michele FariscoMichele Farisco, Kathinka Evers and Carlo Petrini recently published a paper where they discuss the ethical and legal dimensions of biomedical research on patients with disorders of consciousness. According to them, informed consent to experimental treatments is a particularly challenging issue for these patients: Both from an ethical and legal point of view.

Kathinka EversIf we are to improve care and the clinical conditions for these patients, we need research. But all research is not experimental medical research. Observational studies of non-communicative patients also raise the issue of informed consent. In the second part of the article, the authors present an informed consent form for studies through video-recording of patients who are unable to communicate their own consent. The form has been designed within a project on methods of behavioral analysis of individuals in coma or vegetative state run by the Italian National Institute of Health.


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.


Misdiagnosing unconscious patients

[2014-10-09] Assessing consciousness is not easy. The rate of misdiagnosis between vegetative states and minimally conscious states is astonishingly high.

Michele FariscoIn a recent article, Michele Farisco and Carlo Petrini discuss the ethical and scientific challenges of misdiagnosis of these patients. We use different kinds of consciousness assessmentss but how accurate and adequate are they? How can we decrease the rate of misdiagnosis? According to Michele Farisco and Carlo Petrini, making sure patient's get the correct diagnosis is an ethically relevant demand on the scientific community.


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Meet a lecturer: Jessica Nihlén Fahlquist

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

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.

According to Marit Silén, the project serves to show how difficult it can be to show measurable effects of an intervention that participants feel is both important and worthwhile. The fact that the staff appreciated the ethics rounds shows that there is a need for tools that can catch these questions in the workplace.

“The cases and situations that were discussed during the ethical rounds indicate that staff in outpatient psychiatric care face many ethical considerations that they have to have opportunities to discuss”, says Marit Silén. More

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 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.

Stefan Eriksson"As a teacher, I think this format is exciting and in some respects the course actually is a lot better than the traditional class room courses we offer. The online format is more interactive than one would think and there are so many exciting web resources available nowadays that can be incorporated or used", Stefan Eriksson says.

But who needs the course and who is it for? According to Stefan Eriksson, the course works for both graduate students and senior researchers and everyone in between and everyone else who needs to be aware of and handle any questions on research ethics and research integrity that could arise in their work. That includes officials and administrators at universities, funding agencies and research ethics committees. More

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. The 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.

One of the more known companies that offer genetic testing to consumers is the U.S. based 23andMe. About a year ago, the Food and Drug Administration (FDA) put a stop to their "Personal Genome Service": A genome wide test that was marketed without FDA approval. In their marketing, 23andMe claimed that their test provides information on carrier status, health risks, drug response and that the results could help you take steps towards preventing disease. But can it?

Heidi C. HowardThe 23andMe case has highlighted concerns over the potential health consequences with the type of testing they are offering. The European Parliament is proposing regulation that could limit the availability of these tests for the consumer market. In a recent article in Science, Louiza Kalokairinou, Heidi Carmen Howard and Pascal Borry, write that the revision of the in vitro diagnostic (IVD) medical device directive that is currently being discussed by the Council of the European Union could have a drastic effect on the market for genetic tests in the future.

Does this new regulation mean researchers have to worry? Heidi C. Howard from the Centre for Research Ethics & Bioethics (CRB) at Uppsala University is one of the authors:

"No, not researchers using non-commercial tests. But, those researchers or companies wanting to commercialize genetic tests in the future and offer them outside of a healthcare institution context should think about the possible repercussions if this proposed Regulation is definitively adopted”, says Heidi C. Howard More

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

ETHICS BLOG: How do people live with genetic risk?

[2014-12-03] For the doctor, the patient’s disease is a virus infection, a non-functioning kidney, a mutation. The disease is a disorder within the patient’s body.

Pär SegerdahlBut for the patient, the disease is not least a disorder of his or her life and of how the body functions in daily life. The disease disrupts the patient’s plans and direction of life. This can be experienced with grief as a loss of what was “one’s life.” Read more

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

 

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Calendar

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

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


2015-02-23
"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


2015-03-02
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.