Whole-genome sequencing and the implications for health care – Do we have a right not to know?

Whole-genome sequencing and the implications for health care – Do we have a right not to know?

Workshop in Reykjavik 16–18 October 2014


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?

Given the growing interest between the Nordic countries in cooperation in biobank and registry based research, The Nordic Committee on Bioethics believes it is important to discuss these questions on a Nordic level. At the workshop in Reykjavik, specialists in the field will debate some of the challenges of whole-genome sequencing with the focus on autonomy and individual right not to know about health conditions or risk.

The workshop is held in relation to the kick-off meeting of PopGen (Population Whole Genome Sequencing: Implications for the Nordic Solidaristic Health Care).This project is funded by NOS-HS and consists of a series of exploratory workshops.

Please register here.


For more information, please contact Salvör Nordal, salvorn@hi.is or Hanne Silje Hauge, secretary hanne.hauge@nordforsk.org



16 October.      Opening lecture, University of Iceland, Room O101

(organized by PopGen)


17:00:18:30       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.


 17 October. Workshop. Whole genome-sequencing. Do we have a right not to know? The Nordic House. (organized by NCBio):


13:00–13:15      Welcome

13:15–13:45      Ruth Chadwick, University of Cardiff, UK

                           Four arguments for a right not to know

13.45–14.15      Jón Jóhannes Jónsson, University of Iceland

                           Genetic counselling. When and what do people want to know?

14:15–14:45      Ellen Blinkenberg, Haukeland University Hospital, Bergen

                           Publishing a book in defense of genetic privacy: A doctor’s experience


14:45–15:15      Coffee


15:15–15:45      Gert Helgesson, Karolinska Institutet, Sweden

                           Incidental findings and the right not to know –

                           implications for research and society

 15:45–16:15      Donald Bruce, Edinethics, Scotland

                            So when am I ill, now? Some problems with Nano-diagnostics

16.30–17:45      Panel discussion chaired by Vilhjálmur Árnason, University of Iceland with Tim Caulfield, University of Alberta, Canada, Adam Hedgecoe, University of Cardiff,  UK, Thomas G. Jensen, University of Aarhus, Denmark, and Sandra Liede, Supervisory Authority for Health and Welfare (VALVIRA).


17:45–18:00      Closing remarks


18 October. Working seminar (by invitation, organized by PopGen) 

09:00–12:00  University of Iceland