Genetic risk: Should researchers let people know?

Swedish television have reported on a survey that shows Swedish students use commercial ghost writing services to a lesser extent than students in other countries. However, this might change as the number of courses offered in English are increasing. According to Sonja Bjelobaba, researcher at Uppsala University and associated to the Centre for Research Ethics & Bioethics (CRB), sometimes, Swedish teachers are naïve about these issues.

Policymakers struggle to assess the ethical, legal and human rights impacts of IT systems in research, industry, and at home. At the same time, research needs to be useful for industry, academia, and society to have impact on policy. The PANELFIT, SHERPA and SIENNA projects just published an editorial in Orbit to explain the projects collaborate and work together with stakeholders to improve ethical, human rights and legal frameworks for information and communication technologies (ICT), big data analytics, artificial intelligence (AI) and robotics.

A new large European research project will fill the knowledge gaps when it comes to medical treatments of pregnant and nursing women. To be able to evaluate the effects of drugs during pregnancy and breast feeding, Uppsala biobank will collect and store breast milk and blood samples form pregnant and nursing women currently under medical treatment. The samples will be collected from women around Europe. In addition, the drug analysis platform UDOPP at the SciLifeLab’s Uppsala site will develop methods and technology to analyze drug residues in milk and blood.

Screening all or most couples for genetic disease before pregnancy could provide more options for couples who want to have children. But this would also threaten the core values of the Swedish health care system. Amal Matar gave an interview on the ethics of genetic screening before pregnancy, the subject of her dissertation, in Dagens Nyheter (DN), Sweden's largest morning newspaper. 

Entering the room of a patient with cardiac arrest not knowing if there is a DNR order is something nurses don't want to experience. But this still happens. Ethical conflicts surroundings decisions not to resuscitate are common. Mona Pettersson spent 8 years researching DNR orders and in the process she interviewed both nurses and physicians. 

Jessica Nihlén Fahlquist, senior lecturer in biomedical ethics and researcher at Centre for Research Ethics & Bioethics, was interviewed for the Swedish Educational Broadcasting Company (Utbildningsradion, UR) about the ethics of parents monitoring their children via GPS.

Anna T. Höglund, Associate Professor of Ethics, recently published a book in Swedish about food and ethics. According to her, asking the simple question "what should we eat?" raises questions relating to production and consumption of food. We are constantly reminded about the fact that the food we eat influences climate, how animals are taken care of, and the fact that what we eat has an influence on our health.

Åsa Grauman, PhD student at the Centre for Research Ethics & Bioethics, asked people who participated in the large SCAPIS study how they perceived the test results they received after taking part in the project. They value the health screening, but identify shortcomings in the communication of test results.

 Antibiotic resistance is one of the biggest threats to global health, food security, and development today. Mirko Ancillotti's research focuses on the Swedish public's perception of this growing issue. 

Should public health-care systems provide couples with expanded screening for genetic disorders before they decide to become pregnant? Screening programmes could increase our reproductive choices and autonomy. But there are ethical issues at stake.

CRB’s Manuel Guerrero is task leader for the Human Brain Project’s Ethics Rapporteur Programme. Find out how this programme works to create communication links within the project to achieve and maintain the projects Responsible Research and Innovation goals.

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. 

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. 

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?

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.

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. 

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.

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.  

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.