Incidentally discovered diseases - not time for a biobank policy yet
[2013-10-16] Imagine that you allow brain imaging on yourself, for research purpose, and a tumor or a blood vessel with thin walls is incidentally found.
You would most likely want to be informed about these findings, and you would most likely want something do be done.
But what if you donate a blood sample to a biobank, and researchers find a genetic variant that may – or may not – depending on a number of interacting factors that cannot be predicted, result in disease. Would you still want to know?
How incidental findings, complex genetic risk information that ismultidimensional and has unclear predictive value should be handled, is discussed in a recent article in the European Journal of Human Genetics The article is written by Jennifer Viberg together with Mats G. Hansson, Sophie Langenskiöld, and Pär Segerdahl.
Read Pär Segerdahl’s blogpost on the subject on The Etics Blog.
Silent agreement enables cheating
[2013-10-02] Leaders, doctors, coaches and sponsors are vital to athletes, especially when transferring attitudes and values.
When we discuss different dimensions of doping, we usually hold the individual solely accountable. Ashkan Atry, PhD Student at the Centre 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.
Ashkan Atry argues that the social context, the emotional culture, surrounding an athlete can result in that athlete perceiving doping as both acceptable and expected.
By reviewing doping in a interpersonal context, Ashkan Atry suggests that accountability also include sports physicians, coaches, sponsors and sports journalists.
Ashkan Atry defends his thesis October 11.
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 EastResearch 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.
CRB researchers question revision of the Helsinki Declaration
[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.
The current version states that consent should be required for all research that uses identifiable tissue samples and data. But there is opening for an important exception: situations where consent would be impossible or impractical to obtain "or would pose a threat to the validity of the research". The revision suggests striking the last part. The authors believe that this is a narrow interpretation of research ethics that can affect a lot of research that is using sample collections and public health data. According to the authors, there is a need for further discussion before accepting this revision.
Read the letter in Science: Beware Side Effects of Research Ethics 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 >