Centre for Research Ethics & Bioethics (CRB)

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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.


Biobank Perspectives out!

[2014-09-23] The third issue of our Biobank perspectives newsletter with current issues in biobank ethics and law is out!

In this issue you can read about an article in the European Journal of Human Genetics on a new charter for sharing biospecimens and data.

We also write about the report from the Swedish Government committee on legal conditions for registry based research and the proposed ELSI common service for BBMRI-ERIC. Anna-Sara Lind writes about LifeGene: Case closed?


Anna T. Höglund new adviser to the Vice-Chancellor for equal treatment

[2014-09-09] Anna T. Höglund, Associate Professor of Ethics and Anna T. HöglundSenior Lecturer in Nursing Ethics and Gender Studies is the new adviser to the Vice-Chancellor for equal treatment.

Find out more about the Vice-Chancellor's advisers >


Talking to patients that can't talk to us

[2014-09-02] There are several medical conditions that restrict or prevent consciousness. Patients with chronic coma, minimally conscious state and persistent vegetative states represent a range of changes in self-awareness. But how can we tell the difference?

Michele FariscoMichele Faricso has written a chapter in Current Topics in Behavioural Neuroscience together with Stephen Laureys and Kathinka Evers. According to them we need more scientific efforts  in neurotechnological assessment of consciousness and ‘cerebral communication’ with verbally non-communicative patients. But there is also a great need for ethical reflections.


Right to health

[2014-08-27] Access to health care and health rights is not the same around the globe. But how do health rights promote equality? And what role does access to health care play?

Anna-Sara LindA recent book looks at the consequences of adding 'right to health' to health systems. Authors with knowledge in legal and health systems in their respective countries, among them Anna-Sara Lind from Uppsala University, help readers see how the role of rights differ around the world.


How to communicate with the European composite administration

[2014-08-25] Let's say you want to influence European data protection regulation. What can you do to communicate your ideas in the EU?

Jane ReichelJane Reichel has scrutinized the European composite administration to find out how it works. In an article in the German Law Journal she tries to show pathways for communication within the administration.


Plagiarism: a major problem for research

[2014-08-20] Plagiarism is a growing problem in the academic world. New cases are reported on every day and it makes up a substantial number of the misconduct cases we know of. But what counts as plagiarism? And is it always serious?

Stefan ErikssonAccording to Gert Helgesson and Stefan Eriksson, plagiarism can never be considered only a question about how many words of one text is repeated in another. In a recent article in Medicine, Health Care and Philosophy, they suggest that we should understand plagiarism as “someone using someone else’s intellectual product (such as texts, ideas, or results), thereby implying that it is their own”.


Neuroscientific evidence is not objective

[2014-08-06] There are many promises and premises of neuroscience being used as evidence in court. But as an Italian case of a pedophile using a brain tumour as defence shows us: neuroscientific evidence is not an objective tool.

Michele FariscoAccording to Michele Farisco and Carlo Petrini,, neuroscientific evidence is not an unproblematic legal tool. The fact that this evidence was relevant deserves international attention. Uncertain scientific evidence can have a big impact on law.


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Meet a CRB researcher: Heidi C. Howard

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

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. This 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 MascalzoniThe value of collections of data and biospecimens is rising. But this doesn't mean there is more sharing of samples or data. One reason is the different ethical and legal frameworks that are making it difficult for researchers in different countries to collaborate.

Deborah Mascalzoni, philosopher at CRB, is one of the authors. According to her, another reason has to do with the investment it takes to build a sample collection:

"Sometimes researchers are not that keen on sharing. There is a fear that the valuable work they have put into their sample collection will not be recognized. To try and solve that problem, we have provided a framework for recognition in the charter", says Deborah Mascalzoni. More

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.

According to them, an ethics of families means that relationships have to be negotiated in the light of family relationships. Any decisions about medical treatments have to be made taking these negotiated responsibilities into account.

Justice must also be provided. This justice, according to the authors, has to be served both between families and society. But also within the families themselves.

Read article in the Journal of Medical Ethics: Where families and healthcare meet

OPEN LECTURE OCT 7 >> Fear, care and hope: Moral emotions and risk analysis

Risk research has shown that lay people and experts perceive risk in different ways. On October 7, Sabine Roeser, Professor of Ethics at the Delft University of Technology, will argue that emotions and moral values should play an important role in decision making about risks.

Sabine RoeserTechnological risks raise important ethical issues. Nanotechnology, biotechnology, ICT, and nuclear energy can improve human well-being. But they could also convey risks due to accidents and pollution. Technologies can trigger emotions as a consequence of these effects. These emotions include fear and indignation: Emotions that often lead to conflicts between experts and laypeople.

Sabine Roeser will focus on examples from health and engineering contexts to illustrate how an alternative approach of emotions can help improve public discourse. Read more >

Save the date: Epigenetics as the meeting point between nature and nurture

Epigenetics as the meeting point between nature and nurture[2014-08-27] 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

ETHICS BLOG: Does bioethics understand the family?

[2014-09-30] Traditional bioethics does not pay sufficient attention to the role that family relationships can play, for example, in decisions about organ donation.

New opportunities in healthcare create moral problems that bioethics Pär Segerdahltherefore cannot identify and manage. To identify and understand these moral problems requires a specific ethics of families, writes among others Ulrik Kihlbom in an article in the Journal of Medical Ethics.

The authors are members of the “Network on ethics of families.” In the article, they use a striking example of a moral problem that becomes invisible in standard bioethics. I believe the example is authentic. More

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

 

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Calendar

2014-10-06
Journal club: Obesity, Chasing an Elusive Epdidemic
Heidi C. Howard, Senior researcher, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-10-07
Fear, care and hope - moral emotions and risk analysis
Open lecture with Sabine Roeser, Professor in Ethics at Delft University of Technology
When: 16:30-17:15
Where: Navet, SciLifeLab, BMC, entrance C11


2014-10-13
The public perception of synthetic biology
Mirko Ancillotti, MA, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-10-17
Half time seminar: DNR decisions within oncology and hematology care. Clinical and ethical perspectives
Mona Pettersson, PhD student, CRB
Examination committee:
Rurik Löfmark, Emeritus Professor, Karolinska Institutet.
Mia Svantesson, Researcher, Örebro University Hospital
Birgitta Johansson, Senior Lecturer, Uppsala University and Akademiska sjukhuset (Uppsala University Hospital)
When: 10:00
Where: Boströmrummet


2014-10-27
The cost of ethics
Deborah Mascalzoni, Senior researcher, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


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


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.


Biobank and Registry Ethics publications from CRB

Our list of biobank and registry ethics publications (with abstracts) was updated in May 2014.


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.