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What About the Data?

Many genetic testing sites don't explain the privacy ramifications of taking the test, according to Helen Dixon, Ireland's Data Protection Commissioner.

In a clinical or research context with professionals, Dixon said that genetic testing can be helpful as it can uncover markers for cancer, as the Irish Times reports. She was speaking at the Data Summit in Dublin.

"In these types of regulated clinical environments, ethical decisions can be made on what information patients should receive, whether the rest of the family should receive certain results where they could be equally affected by what is identified, whether DNA samples should be destroyed, and whether the data can be safely stored in the cloud, etc.," Dixon said.

However, she noted that that's not necessarily the case for online genetic testing services. According to the Irish Times, she said those sites don't always disclose what data they are collecting, how they are using it, or how they are storing it. Additionally, they don't always mention whether they will be selling the data, she said.

"Neither typically are these websites clear that in fact no DNA test is going to be accurate in terms of predicting if a child is going to be good at playing the piano or in relation to any of the personality traits of the child," Dixon added. "Genetic data also presents the privacy complication of family members being identifiable as well."

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