Centre for Research Ethics & Bioethics (CRB)

Recent

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.


Funding for family ethics

[2014-06-04] Riksbankens Jubileumsfond (The Swedish Foundation for Humanities and Social Sciences) is funding the Responsibility in change - Family ethics workshop held in Sandhamn on June 11-13 this year.

Ethics of FamilyThis is a meeting for the Network on Ethics of Family with participants from Groningen, Uppsala, Michigan, Newcastle, Gothenburg, Linköping and Lübeck.


Dynamic privacy for rare disease research

[2014-05-19] With only a handful of patients in a country, rare disease research depends on international collaborations. The right to withdraw can have unfortunate consequences with lost data jeopardizing already difficult research. But how can researchers respect patients and their right to privacy and still protect the quality of their research?

Deborah MascalzoniPrivacy rights that are regulated through traditional informed consent have been looked on as the major barrier for international data sharing. In a recent article in Applied and Translational Genomics, Deborah Mascalzoni, Angelo Paradiso and Mats G. Hansson writes that privacy often has been interpreted as the right to secrecy. In the article they claim it can hold another meaning: the right to manage your own private sphere.


Open science and sharing data

[2014-05-16] There is a tension between large scale data sharing and the protection of individual data. In September last year an interdisciplinary workshop on open science and data sharing was held in Italy. In a recent paper, a group of researchers including Deborah Mascalzoni from CRB report summaries of presentations and discussions.

Deborah MascalzoniAccording to the authors there is a need to integrate top-down initiatives from governments, institutions and journals with bottom-up approaches from the scientific community. The societal benefits of open science have to be communicated better to explain the benefits. For example the importance of data sharing to avoid the spread of infectious disease.


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Researcher Profile: Lena Ring

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

Epigenetics as the meeting point between nature and nurture[2014-06-18] 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, Mats G. Hansson, Eva Jablonka, Juha Kere, Christopher Murgatroyd, Helen Neville, Gísli Pálsson, Bart Rutten, Dietmar Spengler and Denny Vågerö

Difficult to choose criteria for screening before pregnancy

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

Julia InthornThe idea behind medical screening programmes is almost always early treatment and prevention. But how early can you prevent? And what is ethically justified for couples to test for? In a recent article in Archives for the Philosophy and History of Soft Computing, Julia Inthorn looks at the criteria used for preconception genetic carrier screening like the severity of the disease, the efficiency of the test and how applicable it is for newly developed genetic carrier screening.

But the ethical decisions are not that easy to make. Tests for recessive genetic conditions do not provide simple binary yes and no answers how to deal with a test result. There is knowledge missing regarding the relationship between genotype and phenotype. The development of new genetic screening methods and the selection of tests and diseases has to deal with lots of uncertainty.

According to Julia Inthorn, introducing what is known as 'fuzzy logic' could help ethical decision making. Fuzzy logic can take many values into account. It can also deal with reasoning that is approximate. Much like the recessive diseases preconception genetic screening deals with.

Read article: Fuzzy Logic and Preconceptional Genetic Carrier 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.

Nursing Ethics & Ethics of Care: ReportWe have explored nursing ethics and ethics of care from different angles. A couple of dissertations have already been defended. Current PhD and Postdoc projects deal with everything from no not resuscitate orders, ethical competence for health care staff to telenursing and clinical trials.

If you want some reading for the summer, we suggest you 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] For some patients, there comes a point when it is time to decide what to do if the heart decides to stop. If the prognosis is very poor, doctor's sometimes write a 'do not rescuscitate' order, but they are not the only one's involved in the patient's care.

Mona PetterssonIn 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.

According to Mona Pettersson, nurses need clear and well documented orders. Patients and relatives need to be well informed an included in the decisions. But the nurse is not the only one involved in care. There is also a need for regular ethical discussions within the medical team to make sure nurses and doctors understand each others' opinions.

Read article in Nursing Ethics: Striving for good nursing care: Nurses' experiences of do not resuscitate orders within oncology and hematology care

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
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: will be announced


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
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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.