News from CRB
Stefan Eriksson advisor for good research practice
Stefan Eriksson was recently appointed as the Vice-Chancellor’s advisor for good research practice. The position is new and entails advising the Vice-Chancellor and coordinating issues regarding good research practice at the university.
Looking for legal project coordinator
We are looking for a legal project coordinator for the Swedish ELSI-helpdesk that will provide service for researchers connected to the Swedish research infrastructure Biobank Sweden. Apply by February 20, 2018.
Likelihood not always informative when making sense of genetic risk
The likelihood of disease is not always informative to research participants. The numeric sense of genetic risk does not always correspond to their understanding of risk information. Instead, research participants tend to understand genetic risk as a binary concept: you either are at risk, or you are not.
SIENNA: Preparing the ground for responsible innovation
Policy makers all over the world struggle to assess the ethical and human rights impact of new research in genetics and genomics, human enhancement, artificial intelligence and robotics. Researchers from four continents have teamed up in the SIENNA project to help improve existing ethical and legal frameworks. CRB is part of a consortium that receives a financial contribution of just under €4 million from the EU’s Horizon 2020 programme.
Report from Uppsala workshop on Public Private Partnerships
The focus on Public Private Partnership (PPP) emerged as PPPs are strongly endorsed as a model by EU grant funding schemes. The stakeholders workshop Ethically and legally sustainable partnership between industry and public funded research initiatives: PPP and Rare diseases as a case study took place at Uppsala University, organized by the Centre for Research Ethics & Bioethics (CRB), RD-Connect and the COST Action CHIP ME on 7-8 November 2016. A wide range of Stakeholders took part to the event creating a very interesting and challenging discussion from different perspectives.
Moving away from anthropocentric views of personal identity
Personal identity is one of the more frequently discussed themes in bioethics. What does it take for people like us to survive and exist? The answers tend to focus either on the psychological aspects of personal identity, or biological facts: that we are essentially animals.
DEBATE: Who is responsible when technology decides for us?
Reflection is neccesary if technology is going to contribute to the good society. This is the message from Jessica Nihlén Fahlquist in NyTeknik this week.
James Giordano joins the CRB neuroethics team
We are happy to announce that Professor James Giordano will join the CRB neuroethics team later this year. He is also part of the Human Brain Project’s neuroethics and philosophy team where he is one of the task leaders.
Stem cells: a new type of biobank material?
Stem cells are perhaps not what first springs to mind as biobank material. Yet, even stem cells can be biobank material and there are biobanks that focus on stem cells. The use of this biobank material, however, has some unique features.
A new Swedish legal framework for handling alleged misconduct
Recently, a Swedish Government Inquiry proposed a new legal framework for handling and investigating research misconduct. A new act is suggested to enter into force on 1st of January 2019. Here, Anna-Sara Lind presents the main novelties in the proposal.
B3Africa: first 18 months
In its first 18 months, B3Africa has taken two essential steps: the development of a technical solution for biobank research, and the design of a culture sensitive ethical and legal framework to ensure the rights of the sample donors are safeguarded.
New Swedish legal officer in the BBMRI-ERIC ELSI helpdesk
From February 1 2017, LL.D. Santa Slokenberga is taking over Moa Kindström Dahlin’s obligations at the BBMRI-ERIC ELSI Common Service.
We need to discuss the ethics of technology
Technology is developing rapidly. In a recent interview in Computer Sweden, Jessica Nihlén Fahlquist offers her view on the responsibility that engineers, developers and companies have, and the values technologies bring.
Ulrik Kihlbom Associate Professor of Medical Ethics
The disciplinary domain of medicine and pharmacy at Uppsala University recently appointed Ulrik Kihlbom Associate Professor of Medical Ethics.
New study on children’s rights in biomedicine
The Council of Europe’s Committee on Bioethics (DH-BIO) just published a report identifying areas in science and biomedicine that could affect children’s rights. The report is written by three medical lawyers from Uppsala University.
New research ethics training for supervisors
Why does research ethics matter? What do you need to know as a supervisor? The disciplinary domain of medicine and pharmacy at Uppsala University is launching a new course for all main supervisors.
Swedish research data inquiry on exceptions
The Swedish Government has decided to commission a Research Data Inquiry to review regulations regarding the processing of personal data for research. The reference group includes three researchers from CRB: Mats G. Hansson, Anna-Sara Lind and Jane Reichel.
New research on cyber governance of health data
Digital technology creates both a chance and a pressure to use health data for research and commercial purposes. But this emerging ‘health cyberspace’ needs to be handled in a way that meets our social expectations on governance, security and privacy. And at the same time allows data to be used in ways that are beneficial to society. This is what a project supported by Nordforsk is setting out to do.
Legal aspects of direct-to-consumer genetic testing
Regulating health services is challenging because of the multitude of legal questions it raises. Not only do they relate to the quality of the service and protection of its users, but also to the competence and authority of actors involved. Here Santa Slokenberga, LLD, offers insights from her research on regulating direct-to-consumer genetic testing at the European level.
Swedish radio about genetics, ethics and law
Today, Swedish Radio’s P1 programme ”Vetandets värld” talks about whether parents should be allowed to check their unborn children’s entire genome and other gene-ethical and legal issues. The panel consists of Jane Reichel, Professor of administrative law and Santa Slokenberga, doctor of medical law, both part of the CRB team, Richard Rosenquist Brandell, professor in clinical genetics at Uppsala University and Lisa Fogelberg from the breast cancer organisation Agatha.
Funding for ethical and legal aspects of stem cell research
Mats G. Hansson, Professor of Biomedical Ethics, has received a 2,100,000 SEK grant from the Swedish Research Council. The research will provide analysis of the ethical and legal aspects of using human embryonic stem cells to develop islets of insulin producing cells for patients with diabetes. The project will also develop guidance for clinical practice.
Giving patients a voice in drug development
The patient perspective is important in all medical research, and particularly in drug development. This month, a public private research initiative called PREFER, is launched to assess when and how patient preferences on benefits and risks should be incorporated in decisions on medicinal products.
Parent’s views on genetic screening before pregnancy
Technologies to screen for genetic carrier status have advanced in recent years. It is now possible to screen for several genetic disorders before pregnancy. But do future parents want to find out what disorders they might pass on to their children?
We need to discuss equity in health care
A group of researchers at the universities of Uppsala, Gävle and Mälardalen shows that we are still a long way from what Swedish Healthcare Act prescribes: Equity in health for the whole population.
Managing data protection in practice – Swedish perspectives
The legislative process regarding the General Data Protection Regulation (GDPR) is closed within the European Union as the Regulation was decided in April this year. The activity at the Government Offices of Sweden has, however, not ceased. Here, Anna-Sara Lind gives us her view on the consequences for Sweden.
Public-private research partnerships: Workshop
In recent years, universities have done a lot of work to promote research partnerships with industry. Medical schools are encouraging their research faculties to pursue entrepreneurial strategies (start ups) to start companies and partnerships with industry. Together with RD-Connect and CHIPme, we invite you to discuss these issues in a two day workshop looking at current practices for public private collaborations and especially initiatives on rare diseases on November 7-8 this year.
Informed consent guidelines listed among IRDiRC Recognized Resources
We are pleased to announce that a set of guidelines for informed consent in international collaborative rare disease research developed within the RD-Connect framework has received the IRDiRC Recognized Resources” label.
ELSI Helpdesk: What does it do?
The organisation of the ELSI Helpdesk is coordinated by the Swedish node. It gathers input from various sources and collaboration is ensured with other ELSI experts from the national nodes from the BBMRI-ERIC member states. LL.D. Moa Kindström Dahlin is the Chief Responsible Officer. Here, she offers her thoughts on the process of setting up a federated Helpdesk.
Data Protection Regulation: final result
Anna-Sara Lind gives us an update on the what the final results of the negotiations for a general data protection regulation in the European Union.
Risk of re-identification vs the need to identify individuals
There are risks associated with handling personal data in research. Unauthorised re-identification can cause harm. But there are clear benefits in terms of patient safety related to diagnosis and treatment if researchers are able to distinguish between individuals by identification.
Preconception genetic screening: What health care professionals think
Reproductive genetic screening is surrounded by discussion. The ethical debate revolves around reproductive autonomy, medicalization, discrimination and parental responsibility. A new study that examines the health care professional’s views on these issues in relation to the use of preconception expanded carrier screening (ECS) show they share the same concerns.
It is your DNA, you should have a say
Genetic research depends on people donating their samples, allowing their genetic data to travel the world to be compared to data from other individuals. The policy that governs this process needs to be informed by what people really think. To find out, a unique research project is launching an online survey, YourDNAYourSay, to explore global public attitudes and beliefs around sharing genetic information.
Age, education and health literacy affects understanding of risk
We know that people have difficulties interpreting risk information correctly. This is a challenge for researches who want to know how people weigh possible risks against benefits. A recent study shows that age, education and health literacy affect the ability to understand risks. This means researchers need to have strategies in place for accurately measuring preferences regarding risk.
New book on direct brain communication
Neuroscience offers exciting prospects for communication with infants and patients with brain disorders that reduce their consciousness. This possibility raises many questions. A new anthology offers a systematic assessment of philosophical, scientific, ethical, and legal issues that arise when neurotechnology is used to attempt this type of communication.
Feedback of individual genetic results in Europe still not feasible
When it comes to genetic research, there is a growing consensus that research participants could be offered their individual results. Provided that they are scientifically robust, analytically valid and there is some clinical action people can take to prevent disease. Despite this, it is not common practice to do this in European genetic research. The reasons are many, one being the lack of legal frameworks, guidelines and resources to support feedback processes in research.
Call for ELSI experts
The BBMRI-ERIC ELSI Common Service relies on input from experts. They are now calling for your expertise!
Help to choose good bioethics journals
There are allegedly over 8.000 predatory journals out there that serve their own economic interests instead of supporting readers and science. To help bioethicists choose where to publish, Stefan Eriksson and Gert Helgesson publish two lists on the Ethics Blog: ‘Where to publish’, and ‘Where not to publish’.
EU-US Privacy Shield to once again ensure safe harbours for data transfers
The annulled Safe Harbour agreement puts research collaborations in a peculiar position. Here, Jane Reichel, Professor of Administrative Law, gives an update on the negotiations.
Effective consent for effective research
New sequencing techniques and the increasing sharing of data in international research consortia challenges the informed consent process, adding complexities that need to be co-ordinated. Rare diseases challege informed consent procedures.
Direct-to-consumer genetic testing companies lack clear consent processes for biobanking and research
Whole genome and exome sequencing are becoming cheaper and more available. High throughput techniques are no longer for research only. Today, both patients and consumers can have their genome sequenced. But the information consumers receive about this is often inadequate and could undermine the validity of the consent process.
Debate: Macchiarini scandal - speech of grey-zone lacks foundation
After the scandal with experimental surgeries at Karolinska Institutet where surgeon Paolo Macchiarini used synthetic windpipes, there has been talk of grey-zones in Swedish legislation. Today, a number of Swedish ethics researchers publish a debate article claiming this is not true.
Play helps children with cancer
Children are a particularly vulnerable group in health care. Results from a pilot study shows that pretend play can help children with cancer communicate with doctors and nurses. CRB is about to start a three year project to find out if this method can help these children improve their quality of life and well-being.
Debate: We need new ethical review legislation
According to Mats G. Hansson, the Macchiarini case puts the spotlight on the shortcomings of the Swedish system for ethical review.
Interview with Kathinka Evers in 3:AM Magazine
3AM Magazine just published an interview with Kathinka Evers about what neuroethics is and what its questions are, the distinction between fundamental and applied neuroethics, the relationship between brain science and sociology, and about how her approach avoids both dualism and naive reductionism. The interview also discusses mind-reading, ethical issues arising from disorders in consciousness, brain simulation and its relation to philosophy and whether tendencies in the brain lead to social or individualistic interpretation, epigenesis, human enhancement, cognitive prosthetics and the singularity.
ELSI: Inter-connecting legal frameworks, ethical and social issues
BBMRI-ERIC is a joint European platform for biobanking where ELSI service is considered a key asset. Moa Kindström Dahlin, doctor of public law, is the legal expert in the Uppsala team. Here she offers an update.
Unsafe harbours for researchers
There are many research projects in Europe that have safe harbour as a legal ground for sharing data between the EU and the US. These projects could now be in a peculiar situation as a judgment from the Court of Justice of the European Union concludes that Safe Harbour is not anymore a legally valid ground for sharing data between countries in the EU and the US.
How people value risk information
The Swedish SCAPIS study will identify individual risk factors for heart and lung disease. But how do research participants and patients perceive risk? And what do they want to know? Right now, two doctoral students are looking at people's preferences and perceptions.
RADIO: Perceptive experts better at convincing vaccination skeptics
Authorities and the health care system need to become more humble and perceptive in their communication around side-effects of vaccination. That is the message from Jessica Nihlén Fahlquist in Swedish Radio’s weekly science programme that deals with POTS, a condition with palpitations, vertigo, fainting and pain that is suspected to be associated with HPV vaccination.
We publish news about research and education. This flow includes news from Biobank Perspectives.