Centre for Research Ethics & Bioethics (CRB)

Recent

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.


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.


Difficult to choose criteria for screening before pregnancy

[2014-06-17] Are you afraid of passing a genetic condition to your potential future children?

Julia InthornCouples who plan pregnancy can use something called preconceptional genetic carrier screening to learn if they are both carriers of a recessive inherited disease. 

But how can this difficult decision be made? A recent article by Julia Inthorn examines how fuzzy logic can help to think about the criteria used for screening.


Research for the patient and the professional

[2014-06-13] The relationship between the patient and the health care professionals is one of the themes we have explored at CRB. To help you find out more about our research in nursing ethics and the ethics of care we have put a report together. So go ahead and download this pdf with abstracts of our publications and links to articles that are available electronically.


Nurses want clear 'do not resuscitate' orders

[2014-06-12] In a study that was recently published in Nursing Ethics, Mona Pettersson has interviewed 15 nurses from hematology and oncology wards in Sweden to find out how they experience no not resuscitate orders.

Mona PetterssonAccording to Mona Pettersson, nurses need clear and well documented 'do not resuscitate' orders. Patients and relatives need to be well informed an included in the decisions.


New book on the social life of the human brain

[2014-06-09] The human brain spends its days generating electrical impulses. But it also leads a social life that we need to learn more about.

Kathinka EversKathinka Evers is one of the editors of a recent anthology in Spanish will provide students with neuroscientific, philosophical, ethical and sociological insights.


Biobank and registry ethics - updated!

[2014-06-04] For many years, researchers at CRB have provided constructive advice on how to deal with ethical aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals and listed made a summary so that you can read them.

The report is available in pdf for download with links to online journals. If you want a paper copy, you are welcome to order from crb@crb.uu.se.


What can ERIC do for biobanking?

[2014-05-23] What can the EU research governance tool ERIC do for biobanking? The answer to that can be found in the European Journal of Human Genetics where Jane Reichel, Anna-Sara Lind and Mats G. Hansson from CRB provides an analysis together with Jan-Eric Litton from BBMRI-ERIC.

Jane ReichelAccording to the authors, one of the biggest hurdles for biobank research today is the differences in regulatory frameworks for biobanking within the EU. Unfortunately, according to the authors, the ERIC does not in itself provide substantial tools to help solve this problem.


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Meet a CRB researcher: Heidi C. Howard

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

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

Anna T. Höglund. Photo: Mikael Wallerstedt- I am honored and excited to be appointed adviser to the Vice Chancellor. I believe equal opportunities are important issues for the University. It is a question of democracy, but also a question of taking care of every employee's competence.

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

Want to do research on integrity?

[2014-09-09] Integrity is a commonly used but complex concept. In some cases, violating integrity can be acceptable, but what to people consider an acceptable violation? You could be the one who finds out!

VårdanalysRiksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences) is currently advertising three Flexit-positions as in-house researcher. One of the positions is at the Swedish Agency for Health and Care Services Analysis.

Vårdanalys wants a study on how societys' need for health and population data should be weighed against the integrity of groups and individuals.

You will also be part of the research environment at CRB.

All information about this position is in Swedish.

Riksbankens JubilieumsfondRead more:
Flexit-utlysning 2014

Application deadline: September 29

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'. But what happens in the call? And could telenursing challenge inequalities in health care?

Anna T. HöglundThe Swedish '1177' service is there to make health care more efficient, accessible and safe for patients. But research has shown that who you are can affect the advice you get and to what extent you use the service. The callers’ gender, age, ethnicity and socio-economic status have been reported to have an impact on what happens in the call, and whether it is made in the first place.  

In a study from Uppsala University, Roya Hakimnia, Inger K. Holmström, Marianne Carlsson and Anna T. Höglund analyzed 20 calls made to 1177. Their analysis confirmed what previous research has shown. Callers who didn't speak Swedish very well had difficulties using the service. Some calls focused on gate keeping, with the nurse trying to decide what level of health care the caller needed. Another group of calls was focused on medicine, while a third was categorized as 'doing gender'.

According to the authors, 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.

Read article in the International Journal of Qualitiative Studies on Health and Well-being: Exploring the communication between telenurse and caller - A critical discourse analysis

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 analysed the recent accomplishments in neurotechnological assessments of residual consciousness in patients who can't communicate verbally. He has also looked at the neurotechnology used to mediate communication with these patients.

He 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.

The development of these technologies give rise to a number of ethical questions. What if they don't work and the diagnosis is wrong? What if we over- or underestimate the patient's quality of life? What if we make decisions on presumtions that are not true? The authors focus particularly on the issue of informed consent: Is it even possible for a patient with altered awareness to give his or her consent to attempts at cerebral communication?

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 ErikssonNew cases of plagiarism are reported regularly, sometimes involving very prominent persons. Many investigations of possible misconduct by plagiarism are performed every year, hundreds of them in Sweden alone. But there is still uncertainty about exactly what it means to plagiarize or whether it in fact can sometimes be excused.

According 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”. 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.

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

ETHICS BLOG: Summer, sweet summer!

[2014-06-17] Summer is here! The sun is sometimes shining. There is the occasional rain. And very once in a while there is something new on the Ethics Blog.

Pär SegerdahlSummer at the University is pretty quiet. The students have left and most of the staff are on holiday. The office is empty. What to do? We suggest you read a little something from the Ethics Blog!

This summer we will start a new blog project: turning digital into print.The blog will become book and at the end of the year you will be able to read a selection of texts on paper.

Throughout the summer, Pär Segerdahl will continue publishing on the Ethics Blog. Not as often, but always as interesting and well written. Read his and other texts on the the Ethics Blog.

 

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Calendar

2014-09-15
DNR decisions within oncology and hematology care: clinical and
ethical perspectives
Mona Pettersson, PhD student, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-09-22
Consciousness and its disorders. A neurophilosophical investigation
Michele Farisco, PhD, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-09-29
Application deadline (Flexit): Researcher position on Integrity at
the Swedish Agency for Health and Care Services Analysis
(In Swedish only)


2014-09-29
Good intentions in genetic risk communication may be harmful
Jennifer Viberg, PhD student, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-10-06
Ethical, social and legal aspects of genetics
Heidi C. Howard, Senior researcher, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-10-13
The cost of ethics
Deborah Mascalzoni, Senior researcher, 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
When: 10:00
Where: Boströmrummet


2014-10-20
Autonomy in preconception genetic screening
Amal Matar, PhD student, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


2014-10-27
The public reception of synthetic biology
Mirko Ancillotti, MA, CRB
When: 13.00 - 14.30
Where: BMC, Boströmrummet


More activities and event
calendar >

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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.


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.