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US Firm Admits Leaking Genetic Data to the FBI

on Tuesday, 09 April 2019.

The US company FamilyTreeDNA has admitted that it secretly allowed access to the DNA profiles of its users to the FBI in order to help solve "cold case" crimes.

FamilyTreeDNA is one of a growing number of firms which offer genetic testing as a paid-for service by consumers. Despite having a reputation for fiercely protecting its users, including refusing to sell information to third parties, the US organisation has voluntarily been allowing the FBI to access over a million records, including DNA samples, for testing.

The acknowledgment has been met with outcry by the genealogy community which claims the valuable work provided by genetic testing is being undermined by actions such as those by FamilyTreeDNA and the trust given to such organisations by their users.

Comment

The potential of genetic exploitation is huge; yet, the advancement of this type of research should not be at the detriment of the security of personal data. In order for patients to buy-in to research involving such a personal component, there needs to be a deep sense of trust and an understanding of the importance of protection. The sector as a whole knows this and is striving for this.

However, the key point is to be safe, not sorry and ensure you have taken suitable advice on any data protection aspects of your research/business model which may leave you open to risk. Analyse your data protection procedures early rather than risk costly breaches later.


For more information, please contact Laura Barrell in our Pharmaceuticals & Life Sciences team on 01923 919 313.

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