Where to publish and not to publish in bioethics

Patients' perspectives on being included in medical product decision making

2019-01-16

Research - for better or for worse?

2018-12-14

How do we ensure responsible research and research ethics? How do we minimize the risk of research results are used maliciously or fall into the wrong hands? And who is responsible for the results of research? The issue was discussed at FORMAS' breakfast seminar November 29th. 

The complicated ethics of deciding not to resuscitate

2018-12-14

If a patient is seriously ill, and would not be helped by CPR, there should be a well-documented decision not to resuscitate. But the decision is sometimes made too late, unclear, or not sufficiently communicated. And in the middle of this stands the nurse. Expected to quickly interpret the situation. In her thesis, Mona Pettersson describes the complicated ethics of DNR orders in hematolocy and oncology. 

Including patients in decisions about drugs

2018-12-06

Companies and authorities sometimes involve individual patients and patient representatives in their decisions. By using preference studies, we can find out what larger groups of patients think about drugs. And how they weigh the good and the bad against each other. But what do patients think about being included in these decisions?

Neuroscience of drug addiction highlights ethics and policy

2018-11-23

A recently published paper on the neuroscience of drug addiction raises ethical and policy issues arising out of addiction. The paper concludes social and economic circumstances contribute towards the propensity of individuals to become addicted.

Deciding not to resuscitate: nurses’ and physicians’ perspectives

2018-11-15

When deciding not to resuscitate patients in cardiac arrest, ethical issues arise. Nurses and physicians conflicting perspectives often cause frustration. In a new doctoral thesis from Uppsala University, Mona Pettersson examines clinical and ethical perspectives on “DNR orders” in cancer care. 

Article on gene editing one of the most cited in European Journal of Human Genetics

2018-11-08

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.

Biobank Sweden launches ELSI Helpdesk

2018-10-29

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 receive inadequate information

2018-10-03

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.

Genetic risk: Should researchers let people know?

2018-09-24

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.

Transferring biobank research data between the EU and African countries

2018-08-23

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.

Ethical competence in DNR decisions

2018-07-10

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. 

RRI & philosophy in the Human Brain Project

2018-07-03

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.  

Book release: "På spaning efter etik" on ethics & healthcare management

2018-06-13

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? 

Autonomous cars – how safe is safe enough?

2018-05-06

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. 

Where to publish and not to publish in bioethics

2018-05-04

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. 

A continuum of consciousness

2018-04-27

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.

Ethics and autonomous cars

2018-03-21

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 advisor for good research practice

2018-02-21

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

2017-12-19

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

2017-11-23

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

2017-10-19

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

2017-10-04

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

2017-08-31

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?

2017-05-18

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

2017-03-14

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?

2017-03-06

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

2017-03-06

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

2017-03-03

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

2017-03-03

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

2017-03-01

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

2017-03-01

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

2017-01-24

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

2016-12-20

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

2016-12-13

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

2016-12-09

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

2016-12-07

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

2016-11-10

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

2016-11-02

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

2016-10-18

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

2016-10-17

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

2016-10-04

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

2016-09-26

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

2016-09-23

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

2016-09-22

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?

2016-09-22

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

2016-06-20

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

2016-06-14

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

2016-05-31

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

2016-05-27

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.