Personalised nutrition: Data use and the need for 'genetic privacy'

By Will Chu

- Last updated on GMT

The promise of personalised nutrition has been cooled somewhat by the issues surrounding the use of sensitive personal health data, given by the consumer in order to utilise personalised nutrition services.

Concerns have led to legislation or regulation discussion addressing the privacy concerns of consumers and the need for "genetic privacy,​" which sets out clear ownership rules and use of this personal data.

“When data is collected, who has the right to use it? Who has access to that?”​ asks Virpi Varjonen, analyst & strategist at Invenire Market Intelligence Oy. “It would be great to have clearer guidelines on that.”

“But another thing is the question of who takes control and responsibility that the advice and solutions offered are ethical, that they are safe, and they are doing what is promised.”

“In the consumer world, we have these kinds of dietary tribes. People believe in things that may not be as strongly supported, scientifically.”

Privacy by design 

Others sense there may be a host of opportunities in privacy law that benefit the personalised nutrition service provider but more importantly the consumer.  

 “We also call it privacy by design,” ​said Nard Clabbers, senior business developer – personalised nutrition and health at Netherlands Organization for applied scientific research (TNO). “I think towards the future companies and consumers need not be afraid of the misuse of data.”

“I think we will have to redesign the way we gather data in a way that consumers can own and use their data towards a goal that they find important.

“So in the future, we will see consumers owning or keeping their data, making decisions to whom you are giving your data and what you will get back in return.

“That will be a paradigm shift in the way of looking at data.”

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