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ACMG Calls Data Sharing 'Crucial' for Improving Genomics-Based Healthcare

NEW YORK (GenomeWeb) – The American College of Medical Genetics and Genomics today published a position statement calling for widespread sharing of laboratory and clinical data from individuals who have undergone genomic testing.

The statement, published in Genetics in Medicine, calls such data sharing "crucial to improving genetic healthcare," and notes that "information that informs healthcare service delivery should neither be treated as intellectual property nor as a trade secret when other patients may benefit from the knowledge being widely available."

There is a huge amount of genetic data currently being generated, and the only way to make sense of all the information is to share it, such that researchers, clinicians, and labs all have the same information, ACMG said, especially if the goal of using big data is to improve patient care and advance personalized medicine. Such data could be used to help clinicians interpret test results, and could help omics and diagnostics tools manufacturers to clinically validate their data and develop even more new tests and platforms.

Therefore, it is necessary that research and clinical lab data be contributed to public databases, the statement added. 

"Ultimately, genomic data sharing is going to be critical to advancing what we know about the genetic aspect of both rare and common diseases," said ACMG Executive Director Michael Watson in a statement. "Responsible sharing of genomic variant and phenotype data will provide the necessary information to improve patient care and to empower those who are developing tests and treatments for patients to continue to improve genetic testing."

The group did note that sharing data does not mean compromising patient privacy, adding that database systems will need to be secure and transparent in how they share data.

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