Citizens are ready to share their genome data, but on certain conditions |
| Citizens are willing to share their genome data if it is beneficial to society. The public interest must be the guiding principle for the use of genome information in healthcare. This is what came out of a Citizens’ Forum organised by the King Baudouin Foundation and Sciensano. Composed of 32 citizens, this panel met over three weekends for in-depth discussions about the use of genome data in healthcare. The report on the findings from the Citizens’ Forum will be presented this Friday to the various stakeholders.
Knowledge about the human genome is growing apace. Genomic medicine can contribute to improving healthcare, but it also raises numerous questions. How do citizens feel about sharing their genome data? With whom should this information be shared and for what uses? Which data can researchers use, or not use? And so forth. New technologies lead to developments in the role of the doctor and the patient. The Belgian Minister of Health asked the Citizens’ Forum to examine these questions with a view to providing input for policy development regarding the use of genome data that is supported by citizens. The report sets out the methodology used, as well as the nuanced results and recommendations that have emerged from the Citizens’ Forum. Citizens said that they were willing to share their genome information if the data are in the public interest and more specifically for scientific research. Use of the data should not lead to discrimination or to social, economic or judicial exclusion. It is for this reason that a transparent legal framework should be developed and regularly adapted in function of scientific progress. Most citizens expressed a wish to maintain control over the use of their genome and information regarding their health and this in a transparent manner and after personal, explicit and informed consent. |
| Share this article:
|
More on kbs‑frb.be
Subscribe to our e-news |
|
| Contact Erika Racquet Communication Officer-Press relations 02-549 02 78 – 0478 75 01 41 racquet.e@kbs-frb.beCathy Verbyst Communication Officer-Press relations 02-549 02 78 – 0478 75 01 41 verbyst.c@kbs-frb.be |
With the support of the Belgian National Lottery |