Whole genome sequencing of newborns
[2015-04-23] It is faster and cheaper than ever to sequence a person’s entire genome. Perhaps genomic information could be useful for health care? Then it might be a good idea to sequence the whole population just after birth. Or is it?
Newborns are already being screened for some conditions that require treatment from infancy, so perhaps whole genome sequencing of newborns is the next step? And if we think it is a good idea, we need to ask ourselves if we should use our publicly funded health care systems to pay for it.
A group of researchers from a number of influential organizations published a policy statement in the European Journal of Human Genetics recently. According to them, we shouldn’t sequence the entire genomes of newborn babies. At least not right now. The primary reason for newborn screening should be targeted analysis and identification of gene variants that confer a high risk for conditions that we know to be either preventable or treatable: If we start treatment when the child is newborn. Or at least in early childhood.
Heidi C. Howard, geneticists and bioethicist from the Centre for Research Ethics & Bioethics (CRB) is one of the authors. According to her, it is too soon to conduct whole genome sequencing on newborns. But it is also a question of money. Read more
What it is like to be an animal
[2015-04-08] It is one thing to say that humans are animals, but a different one to actually say "I am an animal". What happens to us when we make this realization about ourselves?
When the line between who is human and who is animal is blurred, we can experience a kind of metaphysical vertigo. In a recent article, Pär Segerdahl takes us on a philosophical exploration of the dizziness we experience when we talk about ourselves as animals. His starting point is a personal experience. Pär Segerdahl shares the dizziness he felt about his own humanness when an ape told him to be quiet and later called him a monster. Read more
Data protection update – one step forward, two steps back?
[2015-02-24] The new European data protection regulation has moved through the administrative and political process last year. This spring, negotiations continue within the Council. Here, Anna-Sara Lind comments the process.
This autumn, the Council of the European Member States met continuously to discuss the European Commission's suggestions for a new Data protection regulation. The regulation will replace the old directive. The debate has centered on matters that have great implications for biobanking and research. The December meetings focused applying the regulation in the public sector and how to administer and and process cases across borders. The discussions the chapter dealing with special categories and processing health care and research (IX) came to a close and the Council summarized the outcome in an internal working paper. Read more
Teen mental health: Adults don't understand
[2015-02-19] Have you ever heard a teenager say you don't understand what he or she feels? It is probably true. A recent study shows that adults underestimate how feeling worried, sad or annoyed can impact a teenager’s mental health.
It looks like there might be systematic differences in how adults and adolescents value different health states. A group of health economists and paediatricians recently published the results of an online survey in Health Economics.
They are able to show that adults put less weight on feelings that are related to impairments in mental health, like being worried, sad or annoyed. Instead, they put more weight on moderate to severe levels of pain than the adolescents did.
Terry Flynn is a health economist at the Centre for Research Ethics & Bioethics ( (CRB) and one of the researchers responsible for the study. According to him, the results highlight some age-related differences that perhaps could have some impact on how we divide resources.
"It might be that grown-ups forget what it is like to be a teenager, but there is also a policy issue here: Maybe our health care systems don't devote enough resources to teen mental health", says Terry Flynn. Read more
Open MIND – access to the latest work in philosophy, cognition and neuroscience
[2015-01-22] An open access collection of the latest work in philosophy, cognitive science and neuroscience is now available online. Kathinka Evers from the Centre for Research Ethics and Bioethics (CRB) is one of the authors.
In her contribution, Kathinka Evers proposes the possibility of being epigenetically proactive. According to her, that means adapting our social structures to benefit, influence and interact with the neuronal architecture of our brains.
The other topics range from the foundations of conscious thought processes to perception, consciousness, and ethics. The Frankfurt-based neurophysiologist Wolf Singer discusses the current status of the search for the neural correlates of consciousness and reviews the methods, including imaging techniques, used in this area of research. Daniel Dennett, one of the leading philosophers of mind, based at Tufts University, explains why consciousness might be an illusion. And Heiko Hecht, an experimental psychologist at Johannes Gutenberg University Mainz, raises new questions about what exactly constitutes an illusion.
Regulating biobank research: new book
[2015-02-24] Biobank research and genomic information are changing the way we look at health and medicine. So how can we regulate it? A recent book published by Springer shows us how the regulatory systems work and raises a critical voice.
Deborah Mascalzoni is Senior Researcher at CRB and the editor of Ethics, Law and Governance of Biobanking that was recently published by Springer. According to her, we can't keep clinical applications and research separate anymore.
But when we start blurring the lines we start challenging existing regulations and ethical frameworks. The book gives an overview of the existing regulatory landscape for biobank research in the Western world. But it also raises some critique of how regulations and ethical frameworks are developed and work.
"There are many questions that still need resolving, for example how researchers should share samples and data across borders. But we also need to figure out some of the basics. Like how we design an ethical informed consent. These are some of the questions that this book addresses", Deborah Mascalzoni explains. Read more
Biobanking for rare diseases
[2014-12-17] Rare diseases are uncommon, and often severe, disabling and life threatening. There is a need for research to help these patients get treatment.
But what are the current trends in biobanking for rare diseases? Mats G. Hansson is part of group of researchers that recently published a review on the current trends in biobanking for rare diseases in the Journal of Biorepository Science for Applied Medicine
Here is a video of what Hugh JS Dawkins and Caroline Graham, two of the authors from the Office of Population Health Genomics, Western Australian Department of Health, have to say about the article:
ETHICS BLOG: Experts on assignment in the real world
[2015-04-14] Experts on assignment in the real world cease in part to be experts. Just consider computer experts who create a computer system for the tax authorities, or for a bank, or for a hospital.
In order for these systems to work on location, the computer experts need to be open to what they don’t know much about: the unique activities at the tax authorities, or at the bank, or at the hospital.
Computer experts who aren’t open to their non-expertise on the site where they are on assignment perform worse as experts and will deliver inferior systems. Read moreRead what Pär Segerdahl and other writers have to say on the the Ethics Blog.