Genetic risk: do people want to know?
[2015-05-04] Biobank studies and genetic research aim at finding out the relationship between our genetic code and our diseases. Sometimes researchers find unexpected information about a participant. Asking people if they want this kind of risk information returned to them seems like a good idea. But is it fair to leave them to make that decision?
Ethicists, regulations and researchers have struggled with whether or not to disclose incidental findings. There has been a shift in the discussion on incidental findings. In recent years, the focus has shifted from discussing what kind of information researchers should give participants, to asking participants what they want to know. In a recent paper in Bioethics, researchers from the Centre for Research Ethics & Bioethics (CRB) claim that shifting the responsibility from researcher to participant comes with a number of problems. Read more
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
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
Contrasts between animals and humans
[2015-04-27] Philosophers often use the contrast between animals and humans as a rhetorical figure. It is easy to assume that this is because they are anthropocentric. But is this really why?
Pär Segerdahl has examined the tendency in philosophy to portray humans as positive beings that “have” some important capacity (like reason), while animals are portrayed as negative beings that “lack” what humans have. In a recent paper he tries to demonstrate that this schematic plus/minus opposition does not necessarily stem from anthropocentrism.
According to Pär Segerdahl, the contrast between animals and humans has a rhetorical function. Philosophers have ideals as thinkers. They have used the contrast to make people sensitive to those ideals. The philosophers write as educators of humankind. Read more
ETHICS BLOG: Where is consciousness?
[2015-05-26] Would it be possible to use brain imaging techniques to detect consciousness and then “read” directly in people’s brains what they want or do not want? Could one, for example, ask a severely brain injured patient for consent to some treatment, and then obtain an answer through a brain scan?
Our brains are so astonishingly complex! The challenge is how to handle this complexity. To do that we need to develop our conceptual apparatus and create what we would like to call a “fundamental” neuroethics. Sound research needs solid theory, and in line with this I would like to comment upon the conceptual underpinnings of this ongoing endeavor of developing a “fundamental” neuroethics. Read more