The Japanese government agreed to protect genomic data using the newly revised personal information protection act.
According to the Nikkei Asian Review, the decision came after an expert panel discussed for weeks on how to treat genomic information as gene-based therapies are becoming popular. The panel agreed Friday that these data should be considered as personal identification codes under the newly revised information protection act that was approved September. This means, it should be classified the same as digitized facial features and fingerprints.
Meanwhile, genomic data associated to diseases will be considered as highly sensitive personal information. The government will add relevant rules in 2016 to clear grey areas in safeguarding genomic data.
Strengthening legal protection by the government may help protect genomic information, but researchers fear it would limit the development of treatments that could save lives.
The PHG Foundation wrote that high quality genomic data can help medical professionals to diagnose and interpret rare diseases. However, there have been challenges on sharing accessing such data. To accurately point the reason for a rare disease, a parent's genome variation should be properly studied. The genomic data could tell the underlying condition. These data should then be compared to a wider scope of population with other patients who have similar conditions.
Gene therapy is becoming very significant in the health industry. Medscape reported that gene therapy has caught the attention of experts in the American Society of Hematology (ASH) as its results on inherited blood disorders were selected for the "Best of ASH" during the organization's 57th Annual Meeting.
Massachusetts General Hospital Cancer Center director of cellular immunotherapy Marcela Maus, MD, PhD said, "I am thrilled with these results. It seems like gene therapy is becoming a clinical reality."
Meanwhile, as equipment to map out genomes more efficiently are becoming affordable at $825, research institutes and universities are collecting genomic data to develop medical treatments.
