Medical society asks DNA testing companies to share findings in public database: 4 things to know

The board of the American College of Medical Genetics and Genomics issued a statement on Jan. 12 calling on Myriad Genetics and other lab testing companies to share genetic testing data in a public database, The Wall Street Journal reports.

Here are four things to know about the request:

1. The ACMG statement came in response to a Dec. 20 WSJ report describing Myriad's decision to change its classification of a variant of the BRCA gene from "pathogenic" to "of unknown significance," demonstrating the lab's belief that the variant is not as closely associated with an increased risk of breast and ovarian cancer as previously believed.

2. The ACMG urged nonparticipating labs — singling out Myriad, which has one of the most extensive databases of BRCA-related genetic testing results — to share their proprietary data and classification information in the NIH-funded ClinVar public database. "No company should put their interest above best patient care," the medical group said in its statement, per WSJ.

3. Sharing this data, the ACMG said, would improve the entire healthcare industry's understanding of genetic disease risk. For example, while other lab testing companies have identified the BRCA variant at the center of the previous WSJ report, they have less data than Myriad and are therefore less equipped to assess its associated risks.

4. In a statement to WSJ, a Myriad spokesman said, "We disagree with the ACMG statement." Myriad has previously defended its lack of participation in public databases by pointing out that it shares some classification information in published papers, at scientific conferences and via individual requests for information from Myriad's staff of genetic counselors.

Read more here.

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