In a more globalized world, and thanks to digital progress, sharing of information has tremendously impacted our daily lives. Whether it is news or messages from family members from the other side of the globe, we can receive all of this within split seconds once we switch on our phones.
The most recent and obvious benefit of data sharing, especially in the health sector, has been the joint global effort to develop a vaccine in the battle against COVID-19. This development showed that through sharing data, such a paramount undergoing is possible and should be used in the future at an even larger scale to treat and cure illnesses. While research scientists shared health data before, in the quest to increase knowledge on diseases and lead up to improved treatments, the need for a more efficient way to share findings has become abundantly clear even for the broad public.
The European academy network formed a working group to address current challenges that hinder a more efficient way to share health data and ensure effective collaboration with public research institutions. In their report International Sharing of Personal Health Data for Research published in April 2021, they demand easier sharing of pseudonymized health data with researchers worldwide, under article 46 of the General Data Protection Regulation (GDPR), overcoming European borders .
Although the technology for sharing pseudonymized health data would be there, which allows a rapid exchange of data amongst research groups, dealing with data privacy and its accompanying legislation slows down the entire process. According to the report, data transfer challenges arise from the legal conflict between the European Union and other countries’ legislation since it is not possible to sign contracts outside the EU – being subject to the GDPR – because of missing viable legal mechanism for sharing data for public sector research .
This leads to a slowdown in medical progress and does not exploit the full potential of research, which ultimately affects the quality of healthcare and thus weakens the health of the population as a whole.
Further information on the report of the three networks of European academies of sciences focusing on global exchange of data, its challenges, and solutions can you find at International Sharing of Personal Health Data for Research
For genomics, the exchange of genetic data is crucial. It is one of the younger areas of human medicine, where new correlations between our genes and diseases arise each day and where there is a lot more to discover. The free movement of data, mentioned by one of the authors, is essential to enhance the benefits to individuals and overall to society. Hopefully, it leads us to new treatments and overall improved health systems and social cohesion and stability.
Still, besides all these benefits, one must keep in mind that genomic data privacy is essential. As our DNA is one of the most personal information, privacy concerns need to be addressed and responsibly solved. Although data protection and data sharing are supposedly seen as contradictory, this does not have to be the case, thanks to today’s technologies. Unified systems that allow the sharing of genetic information conveniently while not violating privacy could be the answer.
At GenomSys, we know about the importance of privacy concerning genetic information, as well we are firm believers in the vital role of genomic data for the future of medicine. We want to empower each individual, through their smartphone, to take direct control and ownership of their DNA. We are enabling each of them to store their sensitive genetic information directly on their phone and with the ability to decide when, with whom, and where to share it. We don’t want to be yet another company in genetics, adapting to the process of DNA data being spread through multiple hands, with a growing sense of uneasiness and concern for genomic data privacy.
GenomSys wants to directly erect a barrier where genetic privacy is necessary to protect and establish a transparent connection between researchers and participants to fully accelerate genetic research and overall the advancement of medical findings.
 Cheng A, Guzman CEV, Duffield TC, Hofkamp H. Advancing Telemedicine Within Family Medicine’s Core Values. Telemed J E Health. 2021 Feb;27(2):121-123. doi: 10.1089/tmj.2020.0282. Epub 2020 Jul 28. PMID: 32744897; PMCID: PMC7888289.
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