Genetic risk: Should researchers let people know?

Biomedical research is constantly finding new ways to detect genetic variation and link the findings to diseases and to the effects of various drug treatments. The amount of information that it produces keeps increasing, but we are still not sure how to manage it. Researchers who took part in the six-year Mind the Risk project coordinated from the Centre for Research Ethics & Bioethics will publish their findings in an anthology focussed on genetic risk communication. 

We are hosting four lunch webinars in association with European Network for Academic Integrity during European Academic Integrity Week, 19-23 October. One for each day of the week except Wednesday the 21st, Global Ethics Day, when we are encouraging everyone to organise events at their home organisations. 

Using biomedical analyses, a new algorithm and integrating patient preferences, researchers in Italy, Spain, France, Germany, Finland, and Sweden will spend 3 years developing new treatments for acute myologic leukaemia, a cancer type of cancer where personalised treatment has not previously been available.

Are we socially steering evolution by influencing the cultural imprints to be stored in our brains? Recent neuroscientific findings would say so. In a recent paper, Kathinka Evers discusses the potential of being ‘epigenetically proactive’ and adapting our social structures to benefit brain development.

How do we become ourselves? How does neuronal activity turn into consciousness and the self? One of nature’s great scientific mysteries is the ‘common currency’ of brain and mind. Georg Northoff, Soren Wainio-Theberge and Kathinka Evers suggest looking for a ‘Spatiotemporal Neuroscience’ to dissolve the brain-mind puzzle.

A brand new virus, the first pandemic in modern time, and in January or February 2021, we are expecting vaccine approvals. It has been a year, but is that enough? What might the consequences be of this race to the finish line? Jessica Nihlén Fahlquist, associate professor and lecturer at Uppsala University’s Centre for Research Ethics & Bioethics, spoke to Radio Sweden and raised her concerns about a race to the finish line. 

Genomics research relies on the ability for clinicians, and researchers to share genetic data with each other across the world. The largest ever survey on global public attitudes towards genomic research and data sharing was just published in American Journal of Human Genetics. Lack of trust in who data is shared with could significantly hinder genomic research. With less than half of the respondents saying they would be happy for their genetic information to be shared for more than one purpose, the results send a call to action for the genomic research community to build public trust.

The Russian Covid-19 vaccine and the lack of transparency of the research about it could have a negative impact on the public’s perception of vaccines, and their trust in government authorities. But it also raises other important questions, such as how we should deal with research from less democratic countries?

The Covid-19 pandemic has changed the wat we work and live, moving much of it online. But how do we make sure that digital works is successful, and becomes a valuable experience? In a recent issue of the Journal of Responsible Technology, the Human Brain Project’s Karin Grasenick and Manuel Guerrero writes about responsible research and innovation and digital inclusiveness during the Covid-19 crisis and the I-Include initiative.

During the coronavirus pandemic, many ethical questions come to the fore. How should care services prioritise among severely ill patients? And how far should the rights of individuals be restricted? There are various ethical perspectives, think Anna T Höglund and Jessica Nihlén Fahlquist, researchers at the Centre for Research Ethics and Bioethics (CRB) in Uppsala. 

Many belive cancer patients who take part in clinical trials receive better treatment than others. A recent study from researchers at Uppsala University, published in BMC Cancer, pokes a hole in that theory. The authors, concluding that there is no quality evidence to support the idea that patients who participate in clinical trials have better outcomes. 

Physicians have a responsibility to protect patients’ autonomy, do no harm, to do good and to divide resources fairly. But how these ethical principles are interpreted in practice can differ from physician to physicians. For whom are they supposed to do good, for example? For the patient, a patient group or society as a whole? With limited resources and large demand, these questions are more crucial than ever. And different interpretation can create conflict.  

The corona pandemic brings a lot of ethical issues to the fore. For example about priorities in the health care system, or limiting individual's rights to protect those that are vulnerable. Episode 47 of Uppsala University’s' "Forskarpodden" talks about public health ethics with CRB's Anna T. Höglund and Jessica Nihlén Fahlquist (in Swedish).

Being an ethically aware consumer today is difficult. Partly because there are so many aspects to take into account, and partly because it is difficult to find trustworthy and reliable information to base your food choices on. But that does not mean there is no point in thinking about what could constitute an ethical choice of food. Anna T. Höglund explores ethical food choices in a recent publication.

Decisions to induce prolonged pregnancies in week 41 instead of 42 were made in two Swedish healthcare regions as a result of the Swepis study. Now, the study is facing criticism. External researchers are critical to conclusions  drawn by the authors and that clinical routines have changed before the study has been reviewed in its entirety. 

Governance and ethics was the theme at the Swedish National Council on Medical Ethics' Ethics Day 2019. Among the presenters was Anna T. Höglund, associate professor of ethics at the Centre for Research Ethics & Bioethics at Uppsala University. Together with Erika Falkenström, she presented on the subject of "Ethics in policy and governance: What ethical competence do health care decision-makers need?". 

What is consciousness? What does it mean to be ‘aware’, and how is our consciousness connected to the physical brain? A recent thesis from Uppsala University explores the philosophical aspects of the issue, and proposes a solution: the ‘intrinsic consciousness’ theory.

Current gene editing approaches allow for precise modification of DNA. These could potentially be used to correct disease-causing genes in human embryos.To evaluate the safety and efficacy of this approach, a large number of studies would be needed. To create embryos for this purpose, women have to donate eggs. In a recent Nature correspondence, CRB’s Emilia Niemiec and Heidi Howard draw attention to the health risks associated with egg donation in this context.  

Anna T Höglund, associate professor at CRB, recently wrote a book on food ethics. These past few days, she has been visible in Swedish news coverage. Trying to answer the question of "What's for dinner?" is not always as easy as we would like it to be. Our choice of food impacts the environment, animal welfare and our health. 

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.