[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.
[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.
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.
[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.
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.
Kathinka Evers is one of the editors of a recent anthology in Spanish will provide students with neuroscientific, philosophical, ethical and sociological insights.
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.
This is a meeting for the Network on Ethics of Family with participants from Groningen, Uppsala, Michigan, Newcastle, Gothenburg, Linköping and Lübeck.
[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.
[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.
According 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.
[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?
Privacy 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.
[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.
According 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.
[2014-05-06] One problem with treating hypertension is getting the patient to adhere. There is a need for user friendly tools that help patients' understand how blood pressure, wellbeing and life style are interconnected. But what should it look like?
A group of researchers are on their way to designing a tool. In a recent study, Ulrika Bengtsson, Karin Kjellgren, Stefan Höfer, Charles Taft and Lena Ring used focus groups to test how patients understand an interactive mobile phone self-report system. .
[2014-05-05] Stem cells, chimeras and other bio-objects are a new type of entity: A biological object created by technology. There is a lot of tension and controversy around them. An embrynoic stem cell is no longer an embryo. But what is it worth in its new form?
According to Anna Lydia Svalastog, the value of a bio-object varies depending on the context. In a recent article in the Croatian Medical Journal Anna Lydia Svalastog writes that the context bound identity and value of bio-objects makes it ideal for the humanities to study.
Read article in the Croatian Medical Journal: The value of bio-objects and policy discourses in Europe
[2014-03-26] What are the needs for research ethics capacity in the Middle East?
A recent article by Henry Silverman, Hillary Edwards, Adil Shamoo and Amal Matar in the Journal of Empirical Research on Human Research Ethics relates the experiences of an international research ethics training programme aimed at low- and middle income countries in the Middle East.
[2014-03-21] Do we have to understand how you think to read your mind? In a recent article, Kathinka Evers and Mariano Sigman explore the possibilities of mind reading using fMRI and trace conditioning. Today we can measure brain states even when a person appears unconscious.
But these technologies can do more than help patients. According to the authors we should be aware of misuse. Especially since there is promise of important medical breakthroughs, there is ethical concerns if possibilities are hyped or results misinterpreted.
[2014-03-20] The defence in a recent Italian case used fMRI-evidence to claim that a brain tumor was the reason behind a case of child molestation. There were different interpretations of the evidence and in the end the defendant was sentenced to five years in prison.
In a recent article in AJOB Neuoscience, Michele Farisco writes that the introduction of neuroscientific evidence in courtrooms is challenging. Assessing the relevance and strength of the evidence is difficult.
This is often justified with reference topast atrocities. In a recent article in Research Ethics, Linus Johnsson, Stefan Eriksson, Gert Helgesson and Mats G. Hansson call this 'institutionalized distrust' and claim that this approach has some limitations.
[2014-03-14] Imagine that you allow brain imaging on yourself, for research purposes, and a tumor or a blood vessel with thin walls is incidentally found.
How incidental findings, complex genetic risk information that is multidimensional and has unclearpredictive value should be handled is discussed in a recent article in print in the European Journal of Human Genetics The article is written by Jennifer Viberg together with Mats G. Hansson, Sophie Langenskiöld, and Pär Segerdahl
[2014-03-06] Researchers and scientists need to communicate new knowledge to society. In a recent paper, Anna Lydia Svalastog togehterwith Joachim Allgaier, Lucia Martinelli and Srecko Gajovic suggest that today, researchers, PR consultants, interest groups, policy makers and lay people interact on the Internet, creating "knowledge landscapes" where knowledge is interrelated, framed and shaped.
[2014-01-15 ] In health care, and particularly in children’s cancer care, it is difficult for children to gain a sense of understanding , control and involvement . This may cause fear and discomfort.
An international collaboration involving experienced researchers, clinicians and ethics researchers, will examine if pretend play have a positive effect on children aged 3-10 years, and their integration in the treatment and decision-making processes regarding their cancer.
The research project is a collaboration between Uppsala University, Uppsala University Hospital, Case Western Reserve University in Cleveland and the University of Hamburg .
[2014-01-24] Despite severe symptoms apparently affecting consciousness, pervasive refusal syndrome has received little attention from neuroscience. Karl Sallinhas initiated a collaboration between clinicians and neuroscientists in order to study PRS as a disorder of consciousness.
But there is not enough discussion on the ethical and social implications of genetic testing.
[2013-12-12] CRB proudly adds Michele Farisco to its international and multidisciplinary profile. Michele Farisco will study ethical and legal issues emerging from neuroscientific investigations of disorders of consciousness.
Grant for research on physical activity during cancer
[2013-11-04] The Swedish Research Council has granted professor Karin Nordin SEK 9.6 million in for the PhysCan project. The research group examines how physical activity can help combat extreme fatigue during cancer. Karin Nordin has previously this year been granted SEK 12,4 million from Cancerfonden.
[2013-10-21] Kathinka Evers hasbeen appointed honorary professor atUniversidad Central de Chile. The appointment will be formally announced at a ceremony in November. Kathinka Evers will also lecture at several universities in Chile.
When we discuss different dimensions of doping, we usually hold the individual solely accountable. Ashkan Atry, PhD Student at theCentre for Research Ethics & Bioethics (CRB) argues that there is a need for a broader social dimension to accountability, if we are to get a more accurate understanding of how doping culture works.
Amal Matar studies ethical issues concerning preconception genetic screening
[2013-10-09] The international profile and competence at CRB has been strengthened once again, as Amal Matar joins the team.
Amal Matar is a graduate of Ain Shams University Medical School in Cairo. She holds a Masters of Science in Biotechnology from the American University in Cairo, and completed the Middle East Research Ethics Training Initiative Certificate Program in Internal Research Ethics at the University of Maryland in 2012.
Amal Matar worked at the Egyptian Ministry of Health for seven years and has participated in several conferences and workshops as a speaker on research ethics in the Middle East.
In her PhD project Amal Matar will study ethical issues concerning preconception genetic screening, as it raises general concerns of genetic testing and counseling, and the handling of information and risk assessments. It also raises questions surrounding the decision-making process and consent procedures, and concerns about screening programs. A central question to the project is how preconception genetic screening accentuates and influences our familial responsibilities. This project will be pursued in cooperation with The Ethics of Family in Health and Social Care Research Consortium.
On October 14, Amal Matar will hold an open seminar on the subject of research ethics in Egypt.
[2013-10-16] The Swedish Foundation for Humanities and Social Sciences has granted CRB and research partners SEK 35,9 million to conduct research on how to manage and handle genetic risk information.
[2013-09-22] The Declaration of Helsinki is under revision. In the latest issue of Science, Joanna Stjernschantz Forsberg and Yusuke Inoue question a change that could have consequenses for important research on samples and data.
According to the authors, there is a need for further discussion before accepting this revision.
[2013-09-20] Anna Höglund, Senior Lecturer in Nursing ethics at CRB, and Erica Falkenström from Stockholm Centre for Organizational Research (SCORE) have received SEK 3.2 million from AFA Försäkring for the project: Ethical competence in healthcare management.
[2013-04-23] Research on rare diseases requires international collaboration and movement of samples and data across national borders. Currently the EU is discussing new data protection legislation that would make this type of research difficult. In the latest issue of Nature Review Genetics, Deborah Mascalzoni et al writes that the EU needs to make an exception for scientific research. Read more
[2013-04-23] The latest addition to our group is Deborah Mascalzoni who joined our team of researchers in April this year.
Deborah Mascalzoni adds to our competence on the ethical issues related to biobank and registry research and brings new expertise on rare diseases. A perfect fit for CRB's role in the 7th framework project RD-Connect with a focus on rare diseases.
[2013-04-23] All of us stand to benefit from large European health studies, but it is not always easy for researchers to collaborate across national borders. To help enable collaboration, the international EU-funded project BBMRI-LPC will spend the next four years working to increase researchers’ access to samples and data. Researchers at CRB have a key role in the project. Read more
[2013-03-27] The European Union is suggesting new data protection legislation that, if it is passed, will seriously impair biomedical research. In an article in Lancet Oncology, Mats Hansson and a group of European researchers write that this his will have consequences for patients in the future. Read more
Blogpost about this article: Don’t shoot at the patient (or at the messenger)
Simplified ethical review and consent procedures benefits patients
[2013-03-21] In the Lancet Oncology today, Mats G. Hansson et al writes that patients are the victims when the European Parliament committee put up bureaucratic hurdles in the form of increased ethical review and overly strict information and consent procedures.
The risks posed by research on genetic information, stored biospecimens and registries are mostly informational. Many of these studies produce results that have direct health benefits for patients, who are the ones who stand to benefit from simplified review and consent procedures.
Want to do a PhD at CRB?
[2012-03-19] We are looking for two new PhD students to join our team! One position is in research ethics/bioethics, with either a focus on pre-conception genetic testing or the regulation of research misconduct. The other is in bioethics/philosophy of mind.
CRB is a multi-disciplinary research environment and we are looking for applicants with different backgrounds.
Application deadline: April 22
Ethical challenges in biobank research on Sámi people
[2013-03-15] In her work, Anna-Lydia Svalastog found unregistred Swedish biobank collections with matierals from Sámi people. According to her, these collections holds ethical challenges concerning donors identification, categorization of the material, the role of regional ethical committees, governance and Sámi representation.
In a recent article in New Genetics and Society, she suggests solutions focusing on transparency and traceability, competence and native peoples' rights and representation in biobank-related activities.
Mats G. Hansson expert in government committee on registry based research
[2013-03-14] The Swedish Government will propose legislation to regulate the LifeGene research registry at Karolinska Institutet. To aid this process, the ministry of education and research recently appointed a committee to look at the pre-requisites for registry research in Sweden. Mats G. Hansson, director of CRB, is one of the appointed experts.
The committee will propose a more general solution for registries that collects information that is meant for use in several different research projects.
[2013-03-07] Do scientists have a responsibility for research that is used to harm others? In a doctoral thesis from Uppsala University, Frida Kuhlau discusses to what extent Life Science researchers have a responsibility to prevent their research from being used to develop biological weapons. Read more >
Doing research in Bioethics: Challenges and methodology
[2013-02-20] Welcome to a workshop for PhD students and young researchers doing bioethics on May 16 2013. Registration deadline April 15.
[2012-02-18] Do we trust biobank researchers? In a doctoral thesis from Uppsala University, medical doctor and bioethicist Linus Johnsson claims that we do: At least in Sweden. And since we do, researchers in turn have a moral responsibility towards us. Read more >
Research participation as a moral duty
[2013-02-04] We can't take effective healthcare for granted and we need medical research to be able to provide it. This is the basis for a hypothetical argument that Joanna Stjernschantz Forsberg and her co-authors use to justify why research participation should be viewed as part of a social contract. In an article in the Journal of Medical Ethics they argue that since none of us knows what kind of healthcare we will need in the future, we have a moral obligation to participate in research. This is based on our mutual (individual and societal) need for medical advances.
Read article: Stjernschantz Forsberg J, Hansson MG, Eriksson S, Why participating in (certain) scientific research is a moral duty, J Med Ethics, online pre-publication, doi:10.1136/medethics-2012-100859
HandsOn: Biobanks on film
[2013-02-01] The BBMRI.se conference HandsOn: Biboanks was held held in Uppsala last September. The conference has now become a six minute video that includes an interview with Joanna Stjernschantz Forsberg.
The conference was a success, with participants from 27 countries. The concept will be repeated by BBMRI-NL somewhere in the Netherlands on 21-22 November this year. You can follow the event on Facebook.
Book launch: Ethics and research on human remains
[2013-01-31] This afternoon, the Norwegian National Research Ethics Committees launches a book entitled More than just bones: Ethics and research on human remains.
CRB's Malin Masterton has contributed with a chapter on our duties to past persons and the moral standing and posthumous interest of old human remains, and there are more contributions from Norwegian, Danish and English researchers.
On the Ethics Committees website, the editor Hallvard Fossheim says that the hope is that this book will aid discussion and ethical debate.
Download or order a copy of the book: More than just bones: Ethics and research on human remains
Things to think about in observational studies
[2013-01-30] In the Journal of the Swedish Medical Association, Stefan Eriksson and Erik Sundström writes that research can become more efficient if data is shared and used in new research. They also think that it should become easier to use health care based quality registries in research.
According to the authors, examining patient records, registry research and other kinds of observational studies share may ethical issues with other kinds of research on humans. But there are some ethical issues that are more specific to epidemiological research: Namely questions regarding personal integrity and data security that appear when data is collected, handled and shared.
Misconduct and conflicts of interest, on the other hand, are present in all kinds of research. But according to the authors, there are also some more general principles to consider: It can be unethical not to conduct certain research, or to obstruct it. Conducting research of such poor quality that the wrong conclusions are made can also be an ethical problem.
Read article (in Swedish): Eriksson S, Sundström E, Etiska aspekter att tänka på i observationsstudier, Läkartidningen 2013;5(110):220-222.
[2013-01-28] One of the greatest challenges of modern science is understanding the human brain. Uppsala University’s Centre for Research Ethics & Bioethics (CRB) is part of the European Commission flagship initiative to simulate the human brain and will look at the philosophical and ethical implications of this. Read more >
Attitudes to doping
[2013-01-14] The world of sports is concerned with doping and other rule violations. This is often considered an individual sportsman's probem. But the emotional processes behind the attitudes a person holds towards rule violationsare influenced by social factors. In a recent paper in Sport, Ethics and Philosophy, Ashkan Atry et al. examines moral responses to doping. According to the authors, discussing doping as an individual problem might be an ineffective way of dealing with the problem. They recommend a twofold approach where social processes in the field of sport have to be adressed along with the education focusing on personal attitudes.
Commercialization of tissues for research
[2013-01-08] Commercializing biobank research is controversial. The idea of paying individuals for the use of their samples clashes with the views that commercialization of human material is inherently wrong and may have dire consequences. So does the possibility of biobanks selling the material to other biobanks or researchers.
In a recent article in Biopreservation and Biobanking, Kathinka Evers, Joanna Stjernschantz Forsberg and James F. Eliason comment on this important issue, aiming to encourage debate. According to Evers and Forsberg, putting biobank samples to the best possible use is vital to the needs of patients. In their view this points against both paying donors for their samples and directly marketing materials stored in biobanks.
Ethical competence in dual use life science research
[2012-12-19] Some life science research has dual use implications. The pressure on scientists to recognize and assume responsibility for the potential misuse of their research for biological weapon purposes is increasing. In an article in the Journal of the American Biological Safety Association, Frida Kuhlau et al. argue that dual use awareness is essential to the development of a culture of responsibility, but not enough. In the article, they introduce the concept of ethical competence to describe awareness, but that is not enough. Scientists also need the capacity for reflection and action. According to the authors, leadership and organizational support are factors that help build and sustain ethical competence. They also believe that the life science community may need to involve other actors and their competences to safeguard dual use research.
New article on actions promoting a positive ethical climate
[2012-11-19] In a recent article in Nursing Ethics, Marit Silén et al report the results form an interview study with acute care ward nurses on what promotes positive ethical climate. Factors reported by the nurses were meeting the needs of patients and next of kin in a considerate way. They also said that receiving and giving support and information within the work group promoted a positive ethical climate. As did working as a team with a standard for behaviour within the work group. Read article: What actions promote a positive ethical climate? A critical incident study of nurses' perceptions
Looking for two researchers to join our team!
[2012-11-06] CRB is currently recruiting two researchers. We need two creative persons who likes to collaborate and work in a multi-disciplinary environment and are fluent in English.
We are looking for a person with a doctoral degree in health economics with documented skills in Discrete Choice Experiments. We are also looking for a researcher in ethics/biobank/registry research regulations. This is a person with a doctoral degree in ethics or law, or someone with a doctoral degree in medicine or life sciences with an interest in ethical issues.
Both positions have a 2 year period of appointment, with possible prolongation. Application deadline: November 29 2012
Researcher in health economics (UFV-PA 2012/2684)
Researcher in ethics/biobank/registry research regulations (UFV-PA 2012/2683)
The Neuroethics Blog writes about responsible neuroethcis and neuro-rubbish
Read Julia Haas' post in the Ethics Blog: Kathinka Evers: On 'Responsible Neuroethics' and Neuro-rubbish
To the origins of the human mind: Interview with Kathinka Evers
In connection with a lecture on the rise of neuroethics, the Centre de Cultura Contemporàna de Barcelona published an interview with Kahtinka Evers. You can view the whole interview on the CCCB website (in English).
Kathinka Evers speaks about the rise of neuroethics
Incidental DNA findings should be validated before donors are told
[2012-04-26] In a letter to Nature, Mats G. Hansson writes that assigning access rights to non validated research findings could be putting the cart before the horse. The letter is a response to Natures report on recommendations that US biobanks should inform participants in genome studies of incidental findings.
Read letter in Nature: Biobanks: Validate gene findings before telling donors
Political ambitions threaten the intellectual integrity of bioethics
[2012-04-03] Ashkan Atry, PhD student at CRB, is now a guest writer on the ethics blog. In his first post, he asks if there is a need to enhance the way bioethicists discuss enhancement. Read this and other posts on the ethics blog!
Ethics bureaucracy: a significant hurdle for collaborative follow-up of drug effectiveness in rare childhood diseases
[2012-01-31] In last year’s research evaluation at Uppsala University, CRB’s research was graded world-leading level. After the evaluation, Mats G. Hansson, director of CRB, initiated an internal process to work with the feedback from the international expert panel that looked at the centre’s research. Read more >