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.
According to Elisabeth Furberg, proponents of both views have an anthropocentric bias. Instead, she suggests a new way of viewing personal identity by accepting the claim that we are animals, and acknowledging that we continue to exist because of our psychology.
Elisabeth Furberg claims it is possible to acknowledge the fact that we are animals without reducing us to “just” animals. In short that we are animals in the sense that (some, but not all) other species are. However, we continue to persist because our psychology separates us from other animals.
A paper by CRB researcher Heidi C. Howard et al. on points and questions to consider for a responsible way forward for gene editing in humans is listed as one of the most cited and shared articles published in European Journal of Human Genetics between 2016-2017.
The Swedish Research Council-funded research infrastructure Biobank Sweden supports healthcare providers and universities with medical faculties working towards national harmonization in biobanking.
Cancer patients looking for online information about experimental clinical drug trials risk finding that is not only bad, but sometimes also wrong. Also on official websites that aim to inform about available trials. According to a recently published study from Uppsala University, this can lead to consequences for patients.
Should researchers inform research participants, if they discover genetic disease risks in the participants? Yes, many would say, if the information is helpful to the participants. However, the value of complex genetic risk information for individuals is uncertain. In a PhD thesis from Uppsala University, Jennifer Viberg Johansson suggests that this uncertainty needs to be acknowledged by both geneticists and ethicists.
Despite the fact that the European General Data Protection Regulation (GDPR) provides ways to transfer data, it is difficult to find ways to share data between Europe and Africa. The feasible routes rely on EU enforcement. This means the possibilities for oversight are limited, leading to considerable data privacy risks.
Decisions not to resuscitate are frequently made within hematology and oncology care. Nurses and doctors involved in the decision-making face ethical dilemmas. To act in the best interest of the patient, they need to trust their ethical judgements. To do that, they need ethical competence.
Scientific endeavors raise many ethical, legal and social questions. Responsible Research and Innovation (RRI) has become an important ethical and political theme for the European Commission. A recent publication from researchers in the Human Brain Project suggests that philosophical reflection could complement the RRI approach by providing ontological and epistemological perspectives on science.
Politicians, officials and healthcare directors have a major influence on the health conditions and opportunities to work in practice. What is their view on their own responsibilities? And what ethical skills are needed for management of care at county council level?
Jessica Nihlén Fahlquist, Senior Lecturer in Medical Ethics at CRB, calls for ethical transparency of incident scenarios autonomous cars may face. She has immersed herself in ethical issues in relation to autonomous cars and artificial intelligence.
Allegedly, there are over 12.000 so called predatory journals out there. Now, Stefan Eriksson and Gert Helgesson present an updated list of where tp publis and not to publish in bioethcs.
There is a need for an overarching theory of consciousness in both science and philosophy. To build one, members of the CRB neuroethics and philosophy team suggest we should look at the brain as something more than an input-output machine. Instead, they propose focusing on its intrinsic activity.
A Volvo model Uber-taxi recently hit a woman in Arizona, US. The car was in autonomous mode. According to Jessica Nihlén Fahlquist, Senior Lecturer in Medical Ethics at CRB, this case highlights several of the ethical issues relating to self-driving cars.
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.
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.
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.
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.
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.
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.
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 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.
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.
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.
From February 1 2017, LL.D. Santa Slokenberga is taking over Moa Kindström Dahlin’s obligations at the BBMRI-ERIC ELSI Common Service.
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.
The disciplinary domain of medicine and pharmacy at Uppsala University recently appointed Ulrik Kihlbom Associate Professor of Medical Ethics.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
The BBMRI-ERIC ELSI Common Service relies on input from experts. They are now calling for your expertise!
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’.
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.
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