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Bless our hearts as Edmund Burke quoted: The only thing necessary for the triump of evil is for good men(and women) to...

Update genetic testing rules

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Friday, September 7, 2018

The search for the so-called Golden State Killer had hit a dead end when investigators decided to test DNA evidence from a crime scene against genetic data on GEDmatch, a website of volunteered samples. Eventually, this technique helped investigators close one of the most notorious cold cases in recent history — but it also raised important questions about the privacy rights of customers.

How and when should genetic testing companies share data with third parties such as researchers, websites or law enforcement officials? And do companies have an obligation to inform users that their information has been shared?

These concerns were heard in the genetic-testing industry. A number of popular companies, including Ancestry and 23andMe, recently committed to a new set of best practicesgoverning how and when they would collect, use and share customers' DNA. Among these guidelines are promises that the firms would obtain "separate express consent" from users before sharing their genetic information, use robust information security and publicly disclose the number of law enforcement requests received at least annually.

Though the guidelines do not cover the aggregated data often used in medical research, they apply to riskier forms of genetic data-sharing: that of individual-level, identifiable information. Critics fear that, in the wrong hands, this data could be used to discriminate based on disease risk or medical conditions; reveal information about an entire family, including someone's future children; and even prove infidelity and parentage without a person's consent.

With these risks in mind, the new commitments are an important step toward transparency and security in an industry that has faced little oversight. But voluntary commitments from a handful of companies can only do so much, with at least 90 genetic testing providers operating in the United States. The Federal Trade Commission can penalize companies that fail to follow through on promises to consumers, but its broader authority to police the field is limited.

Congress should step in. Genetic-testing technology is progressing rapidly. The rules need to keep up. Even as companies strengthen their privacy policies, lawmakers should consider creating baseline security standards and disclosure requirements to ensure that consumers understand the risks and how their data can be used.

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Humans of Greenville

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Local photographer Joe Pellegrino explores Greenville to create a photographic census of its people.

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