It is important to determine metadata, i.e. the information that describes the data, by the exact same means in all research institutions and laboratories around the world. Otherwise, we cannot obtain the maximum benefit of the data for research. It cannot be linked to data produced elsewhere. There is still work to do to achieve uniform data processing, analysis and principles of use.
Founded in 2013, GA4GH (Global Alliance for Genomics and Health) is an international alliance of more than 500 organisations representing the bioinformatics, health care and IT industries with the aim to create standards for data that is distributed for research purposes. In November 2017, ELIXIR and GA4GH decided to launch cooperation. The agreement is related to the GA4GH Connect project, the purpose of which is to introduce data standards in clinical patient work by 2022.
Professor Aarno Palotie at the Institute for Molecular Medicine Finland (FIMM), University of Helsinki, wishes that the new legislation created in Finland that relates to using genome data and secondary use of register data would accelerate the permit processes and clarify the regulations concerning the use of data. Read more from the article.