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Direct to consumer genetics – Whose data is it?

Wherever you work in life sciences, be it in healthcare of pharmaceuticals, data is one word that is on everyone’s lips.

Many pharmaceutical companies are switching their focus to collecting, analysing and learning from large data sets. In fact, in early 2018, Vas Narasimhan, CEO of Novartis, posted a blog post on Linkedin about reimagining Novartis as a “medicines and data science” company.  People are more heavily relying on data than ever before, and in genomics, there is just so much of it!

Unless you have an identical twin, your DNA is unique to you and can provide some very personal information such as disease susceptibility and phenotypic information about what you look like. In fact, a study in 2017 managed to use genetic information to predict what participants in the study looked like, their voice, height and weight.  This figure from the study shows how scarily accurate these predictions can be, with the photos on the left being the participant, and the pictures on the right being a computer modelled prediction!

This figure is Fig 2. from the article and shows how accurately a DNA sample can predict how somebody looks

So, with such personal data at hand it begs the question: who does this data belong to, and how can it be used?

When a person takes a direct to consumer (DTC) genetic test, such as those provided by 23andMe or Ancestry DNA, the companies sell the genetic data on. Most of these companies are transparent in to consumers about how they use their data after a survey in 2016 showed that only a third of genetic tests clearly explained how their data could be used. However, concerns over whether people are actually reading the terms of the agreement are questionable.

Likewise, what happens to the product that is produced by the people who are purchasing your data? A pharmaceutical company that develops a drug using a DTC genetic database is never going to pay everyone who has contributed data part of the profits. To address this, 23andMe have put a clause into their terms asking consumers to waive their rights to a share of any profits made from the research conducted on their data.  But this consumer has paid for their testing, had their data sold for profit, and then had a product made out of it. Is this model fair?

Recently, both 23andMe and Ancestry DNA has reported a drop in sales and having to significantly downsize their workforce. There is some ambiguity on who has access to these genetic databases and that they are using it for. Other than pharmaceutical companies searching for drug targets, other players such as insurance companies and law enforcement.

The drop in DTC sales comes after detectives revealed they had used GEDmatch, a public genetic database, to solve a murder case, raising privacy concerns.  The case was solved in a way that was unique, whereby long preserved DNA data was uploaded to this database and was matched with the criminal’s distant relatives, leading to them solving the case. An overview of this case is here.

To counteract some of these concerns, Nebula Genomics, a start up by George Church, offers an additional layer of control of their data to the consumers. With a Nebula test, consumers have the option to share their data, not share their data, or to be asked each time someone wants access to it. The service also offers consumers the option of being part of a “subscription” service, where you can have access to genetic information relevant to you sent regularly.  

With the rising concerns for privacy, the DTC market seems to be dropping and some companies are playing on this to change their privacy and data-sharing models. But the question will continue to concern the general public for some time.

Who owns this data, and how can it be used?

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