The Rise of Personal Genetics: When a Startup Investigates your DNA

By , 8 October 2015 at 16:25
The Rise of Personal Genetics: When a Startup Investigates your DNA
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The Rise of Personal Genetics: When a Startup Investigates your DNA

By , 8 October 2015 at 16:25
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Finding their biological parents or discovering what genetic diseases they could transmit to their children are just some of the reasons why more and more people are opting to take the 23andMe genetic test, one of the many DNA tests provided by the emerging personal genomics industry.

Stacy and Greta, two American sisters, met thanks to a DNA test. Their cousin Laura hired the services of 23andMe, a biotechnology startup that analyses customers’ DNA and compares it to the other people who are registered on their database. Laura provided her genome with the hope of finding her biological father. Instead, she met Greta, her cousin.

Revealing information as sensitive as the genome involves certain risks.

Companies such as Genelex, Gene By Gene, InVitae or Interleukin Genetics also solve family mysteries and try to locate genetic diseases that customers could pass on to their children. To that end, they undergo tests that give them access to their full DNA, with all the consequences which that might entail.

The Genetics Business

The real business of the company, however, is not the tests which are carried out for 100 euros. As they pointed out in Technology Review, a customer’s genetic data on 23andMe is worth 2,500 times more than a user’s data collected by Facebook. Since it was founded in 2006, the firm has managed to compile an extensive genetic database of nearly 600,000 people.

But the Mountain View-based company has not been the only one to take advantage of this business opportunity. For two years now, in the US, there has been an emergence of companies which analyse customers’ genomes, whether it be for family, research or even sporting reasons. This is the case of DNA Fit, a British company, which shows, moreover, that there is a market beyond the US borders.

Andrew Steele, a former Olympic athlete and current ambassador of the brand, told Think Big that the company provides customers with information on how their body reacts to physical activity of a greater and lesser intensity, how long it will take an injury to heal or the diet which is best suited to your body.

“We have a very broad range of customers. We work with professional athletes and military personnel, although our main customers are people who try to keep in shape and want to make sure that they are going about it the right way”, he explained. They are people who go to the gym three or four times a week and do not trust the exercises or diets they find online or come across in the media.

FDA

A couple of months ago, the US Food and Drugs Agency (FDA) gave the green light for 23andMe to market a new genetic test, designed to detect if a customer is carrying a gene associated with Bloom syndrome, a disease which, among other things, causes skin to be hypersensitive to sunlight.

This authorisation has restored the peace after the US authorities, in 2013, prohibited the company from marketing genetic tests related to health.

According to John Conley, a lawyer who is an expert in the field of personal genetics, the FDA mistrusted (and is probably still suspicious of) 23andMe, not so much for the service they provided or for the dangers it might entail, but rather because the information they gave to customers was not sufficiently precise.

Where is the privacy?

Revealing information as sensitive as the genome involves certain risks. Mark Gerstein, professor of biomedical informatics at the University of Yale, has spent a long time investigating the dangers of giving DNA to a private company. In his view, it is likely that in the future “a lot more will be known about you” and what your descendants will be like, among other things.

Stacy and Greta, two American sisters, met thanks to a DNA test.

“The worrying thing is that once you share something on the web, you send it to a server and you cannot recover it. Once the information is there, it stays there.” If you data is subsequently used for harmful purposes, “you will not be able to change your genome. You can change your phone number and your credit card number… but not your genome.”

In addition, not all companies in the sector are equally strict when it comes to privacy. European companies, due to the legal framework in which they operate, have to be more careful. DNA Fit assure us that once they have made and submitted the report to the customer, they eliminate the results of the test. “We follow UK law on privacy protection, so all the samples we take are destroyed in the end. What remains is a PDF with the information obtained from the test.”

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