Centre for Research Ethics & Bioethics (CRB)

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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.


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.


The principles for sharing

[2014-09-23] To improve health care and validate research, we need to provide easier access to samples and data: Access that at the same time is ethical.

Deborah MascalzoniThis is the guiding principle in a new charter for sharing of biospecimens and data published by an international group of researchers in the European Journal of Human Genetics. Deborah Mascalzoni, philosopher at CRB, is one of the authors.

The charter conforms with relevant regulation, both legal and ethical and provides a comprehensive tool for researchers. It deals with consent, data quality, criteria for acknowledgement and much more. It also provides a very hands-on too for data and material sharing agreements.


Neuroethics of pain and suffering in disorders of consciousness

[2014-10-06] Michele Farisco and Adriana Gini presented a poster at the International Neuroethics Society Meeting last year.

Michele FariscoTheir abstract was selected and published in AJOB Neuroscience recently.


New view on family relationships

[2014-09-22] Healthcare today raises moral problems that don't really fit into the 'standard' bioethics. But if we re-phrase them in terms of problems in the ethics of families, they become visible. The authors of a  recent position paper on the ethics of families in the Journal of Medical ethics claim that we need a distinctive ethics for families in bioethics.

Ulrik KihlbomThe authors are members of the Network on Ethics of Families. Ulrik Kihlbom, Senior Lecturer in Medical Ethics at CRB, is one of the authors.  In the paper, they discuss what 'family' actually means and why families are so important to the people who live in them.


Telenursing challenges inequalities

[2014-09-05] Have you ever consulted a nurse on the phone? In most Western societies, chances are you have. And especially in Sweden where the entire country is connected to Swedish Healthcare Direct (SHD), or '1177'.

Anna T. HöglundIn a study from Uppsala University, Roya Hakimnia, Inger K. Holmström, Marianne Carlsson and Anna T. Höglund analyzed 20 calls made to 1177. According to them,, telenursing could potentially challenge inequalities in health care.  Through better awareness of gender biases and the callers’ different resources for making themselves heard, the communication might become more equal and better suitable for all callers.


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Meet a CRB researcher: Heidi C. Howard

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

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.

Kathinka EversSimulating 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. Today, two Human Brain Project (HBP) researchers, Kathinka Evers, philosopher at the Centre for Research Ethics and Bioethics at Uppsala University and Yadin Dudai, 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.

For many scientists, understanding means being able to create a mental model that allows them to predict how a system would behave under different conditions. For the brain sciences, this type of understanding is currently only possible for a limited number of basic functions. In the article, Kathinka Evers and Yadin Dudal discuss the goal of simulation. In broad terms it has to do with understanding. But what does understanding mean in neuroscience? More

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. More

Registration open! Epigenetics as the meeting point between nature and nurture

Epigenetics as the meeting point between nature and nurture[2014-10-08] 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?

We welcome you to a multidisciplinary workshop on Epigenetics to explore the potential for multidisciplinary research initiatives

Sessions on the early development phase, nutrition, pharmacology, mental disorders and the social contexts

When: 19-20 March 2015, Uppsala, Sweden.
Where: Uppsala University main building

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

Speakers: Marco Boks, Eero Castren Jean-Pierre Changeux, Robert Erikson, Kathinka Evers, Mats G. Hansson, Christina Hultman, Eva Jablonka, Juha Kere, Hugo Lagercrantz, L.H. Lumey, Christopher Murgatroyd, Helen Neville, Gísli Pálsson, Elisabeth Radford, Bart Rutten, Dietmar Spengler, David St Clair and Denny Vågerö

Morally responsible risk communication

[2014-09-30] Risk communication has to be effective. But it also needs ethical legitimacy. This has become particularly clear after the Fukushima nuclear disaster when three of the reactors suffered meltdowns. But how can we meet these demands?

Jessica Nihlén FahlquistIn an article that was recently published in the Journal of Risk Research, Jessica Nihlén Fahlquist and Sabine Roeser suggest a three-level framework for morally responsible risk communication: A legitimate procedure, an ethically justified risk message and evaluation of the effects of both message and procedure.

According to them, emotions also have an important part to play in risk communication. When it comes to addressing and explicating moral values, sympathy, empathy and feelings of responsibility have leading roles.

On October 7, Sabine Roeser will hold an open lecture on fear, care and hope: Moral emotions and risk analysis at Uppsala University. Welcome!

Read article in the Journal of Risk Research: Nuclear energy, responsible risk communication and moral emotions: a three level framework

ETHICS BLOG: How can the brain be computer simulated?

[2014-10-29] A computer simulated human brain – that undoubtedly sounds like science fiction. But the EU flagship project, the Human Brain Project, actually has computer simulation of the brain as an objective.

Pär SegerdahlWhat will be accomplished during the ten years that the project is financed will presumably be simulations of more limited brain functions (often in the mouse brain). But the proud objective to simulate the human brain has now been formulated in a serious research project.

But what does “computer simulation of the brain” mean? Read more

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

 

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Calendar

2014-11-03
Discrete choice experiments (DCE): Segmenting people according to their health attitudes and treatment preferences
Terry Flynn, PhD, choice modeller and health economist on sabattical from the University of Western Sydney
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-11-17
The ethics of care as moral theory
Anna T. Höglund, Senior Lecturer in Nursing Ethics and Gender Studies, CRB, and Jessica Nihlén Fahlquist, Senior Lecturer in Medical Ethics, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-12-01
Informed consent in research: does it still have a meaning?
Deborah Mascalzoni, Senior researcher, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-12-08
Pretend play in the care of children with cancer
Sara Holm, Researcher, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-12-15
Discussing cardiovascular risk in primary care - physicians' experiences
Sofia Lavén, PhD student, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


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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.


Some of our profile areas

Want to read more about some of our profile areas? We have published summaries of publications in some of our profile areas:


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.