Forum BioData.pt: Value Creation for Healthcare System’s Genomics Data
The Forum BioData.pt: Value Creation for Healthcare System’s Genomics Data, took place in the last 14th of January , at i3S – Porto, with experts from the private sector, research infrastructures, the national health system, and bioethics. It gathered Ana Portugal Melo, Ana Sofia Carvalho, Manuel Teixeira and Noémia Afonso, in a round table moderated by José Pereira Leal.
Going back to medical history, we will find that was through the collection of data and it posterior analysis, that it was possible to understand what was causing the damage, and therefore, solutions were found. In that time, this represented an important improvement of hospitals’ health conditions.
It is evident that when one compiles and coherently analyses the information, solutions are created!
Although nowadays information about clinical and genomic data exists, it is not stored altogether in a secure database. In addition, in order to regulate and guarantee that each institution does it in the same way, protocols should be made and implemented. Ethics committees take the role to defend the interests of people, when their data are made available, clear recommendations on how informed consent should be available as well as strict procedures accessing their data.
The round table added value to this topic, leading the audience to a better understanding on how the ethical principles, such as confidentiality and anonymity of personal information should be handled. Nevertheless, these are not the only values to consider. Genomic data, stored and managed in an ethical manner, can be incredibly helpful so that the knowledge on genomic diseases that affect several individuals all over the world can be increased. The discussion also focused on the importance of creating national repositories of genetic variants to support diagnostic and therapies.