Málstofan "Whole-genome sequencing and the implications for health care – Do we have a right not to know?" fór fram í Háskóla Íslands og Norrænahúsinu á dögunum 14 - 16 október 2014. Málstofan var á vegum norrænu lífsiðfræðinefndarinnar og fjallað var um erfðaupplýsingar og réttin til að vita ekki.
Á málstofunni fluttu fimm sérfræðingar eftirfarandi erindi:
- Tim Caulfield, University of Alberta, Canada - Is Personalized Medicine Really the Answer? Mapping the Benefits and Limits of Using Genetic Testing to Improve Your Health. (Hlusta á upptöku)
- Bjørn Hofmann, University of Oslo, Norway - To know or not to know, that is the question – right?
- Jón Jóhannes Jónsson, University of Iceland Genetic counselling - When and what do people want to know?
- Ellen Blinkenberg, Haukeland University Hospital, Bergen - Publishing a book in defense of genetic privacy: A doctor’s experience
- Gert Helgesson, Karolinska Institutet, Sweden - Incidental findings and the right not to know – implications for research and society
- Donald Bruce, Edinethics, Scotland - So when am I ill, now? Some problems with Nano-diagnostics
Efni málstofunar var lýst á með þessum hætti á heimasíðu norrænu lífsiðfræðinefndarinnar:
With the whole-genome sequencing and whole exome sequencing, especially the issue of incidental findings, the boundaries between genetic research and clinical practices are being tested. An incidental finding has been defined as “a finding concerning an individual research participant that has potential health or reproductive importance and is discovered in the course of conduct – but is beyond the aims of the study”. A major question is how incidental findings should be translated into the health care practice. Should individuals be informed about such findings? Do they have a right not to know?
Sjá nánar á heimasíðu norrænu lífsiðfræðinefndarinnar
Skoða má ljósmyndir frá ráðstefnunni hér.