This year’s guidelines for the regulation of Genomics data have been released by the European Observatory on Health Systems and Policies entitled, “Regulating the unknown: a guide to regulating genomics for health policy-makers (2021)”.
The use of Genomics Data has frequently been called to question based on the ethical, legal and social issues posed by using and sharing this data.
The latest regulations state that “Genomics can improve individual and population health outcomes, but making genomic data widely available creates ethical, social, and legal challenges.”
General Data Protection Regulation (GDPR) has complicated these issues more, and it is believed that “the way genomic data are processed will impact research, clinical practice and national regulators, even beyond the EU.”
The discussion of disparities in healthcare is often a key topic of any panel discussion as the lack of genomics data from minority groups is problematic in gaining public trust for the use of such data as some don’t feel widely represented by the data available.
These disparities were a key message from the briefing, “Genomics reveals sensitive personal and familial information. This may improve prevention and treatment but means that, without regulation and other measures, at risk individuals can be discriminated against; or that those at low risk may opt out of public protection. This endangers the equity and solidarity that underpin European health systems.”
It’s important to tackle these social issues as successful gathering and use of genomic data requires using everyone’s data from all groups.
Co-writer of these guidelines, Sandra Liede, will be joining us for our Patient Week event on March 9 to discuss Patient-Centric Data Collection and Sharing. Find out more about our Patient Week event here.
If you would like to read the rest of the guidelines, you can find them here.