麻豆传媒

YOUR DNA determines many aspects of who you are, and an increasing number of companies are claiming they can decode it for you. But they may be getting more out of it than you do.

Some tests that reveal genetic trivia sell for as little as $29, although typical prices are between $100 and $200 if you want more detail, with similar costs outside the US.

But the companies selling these kits stand to gain a good deal more. Their vast, growing databases of genetic information are hugely valuable to researchers and pharmaceutical companies. Flogging this data, or mining it for drug discovery, could be where the big profits lie. So should these firms be paying you, rather than charging for what might ultimately be little more than a conversation starter?

The tests on offer generally fall into three categories. Some firms provide insights into your ancestry from a saliva sample. They search your DNA for genetic variants known to be common in certain parts of the world, now and in the past.

For example, Living DNA, which is based in the UK, uses this information to suggest where your ancestors might have lived, both in recent times and thousands of years ago.

Other companies like 23andMe offer health information, looking for genetic variants that might put someone or their children at risk of disease, as well as more trivial factoids, such as how well you can handle your alcohol. In 2013, the firm was banned from selling a test for 254 disorders and conditions because the US Food and Drug Administration was concerned that the results could be easily misinterpreted. The company now offers a scaled-down test for 10 disorders, including late-onset Alzheimer鈥檚 disease.

Then there are the tests that offer information on fitness, nutrition, mood, personality 鈥� you name it. Soccer Genomics says it can assess speed, strength and nutrition-related genes to help optimise your performance in the sport.

Even Marmite got in on the action last month, partnering with a firm called DNAFit to sell a test that claimed to tell if you are genetically predisposed to love or hate the yeast spread. 鈥淚 call these genomertainment,鈥� says Rick White, founder and CEO of , a US-based company that plans to offer genetic testing for disease risk and drug reactions.

鈥淪elling DNA data, or mining it for drug discovery, could be where the big profits lie for genome firms鈥�

These tests sound like just a bit of fun, but have a serious side. Orig3n, which sells a 鈥渟uperhero鈥� saliva test that will supposedly tell how your genes affect your strength, intelligence and ability to learn languages, got into trouble last month after offering free tests to fans of the Baltimore Ravens, an American football team. The 鈥淒NA Day鈥� promotion was by the Maryland Department of Health after privacy concerns were raised.

Genome value

And more serious again is that for many of these companies, selling tests to consumers is almost a sideline 鈥� the real value is in the data they gather.

Orig3n, for example, has grander plans to find medicines that can regenerate worn-out or damaged tissues and organs. In 2015, 23andMe announced plans to mine its own information to search for new medicines. 鈥淲e are putting significant resources into translating genetic information into the discovery and development of new therapies for our customers and the world,鈥� CEO Anne Wojcicki .

This shouldn鈥檛 come as much of a surprise. 23andMe holds an incredibly valuable database and has already made a number of deals to share it with biotech and pharmaceutical companies.

While these firms tend not to reveal the exact number of customers they have, 23andMe is known to hold the genetic information of at least two million people. 鈥淣o study in the world can recruit as many people as they do,鈥� says .

What makes that information so valuable is the reams of personal details that accompany it. 23andMe send hundreds of questions to their willing consumers on a regular basis. 鈥淭hey ask all sorts of questions, from how frizzy your hair is and what you can taste to important biomedical information about disease,鈥� says Perry. 鈥淚t鈥檚 very valuable 鈥� often it can lead your research in unexpected directions.鈥�

The firm shares its data set with academic researchers like Perry for free. 鈥淚t鈥檚 like a competition,鈥� says Perry. 鈥淵ou pitch your project to them. If they say yes, they run the analysis and share the de-identified aggregate summary statistics with you.鈥� So far, Perry has used 23andMe data to explore the genetics of polycystic ovary syndrome and the age of onset of puberty.

Its deals with pharmaceutical companies are more lucrative. Since 2014, 23andMe has partnered with companies including Pfizer, Reset Therapeutics and Genentech to study disorders ranging from Crohn鈥檚 disease to Parkinson鈥檚.

The financial details are largely secret, but in 2015 Forbes paid $60 million for the whole genome sequencing data of 3000 customers of 23andMe with Parkinson鈥檚 disease. 鈥淲e don鈥檛 disclose the financial value of our agreements due to contractual obligations, and we can鈥檛 confirm previously reported dollar figures,鈥� the firm told 麻豆传媒.

鈥淚t鈥檚 a very clever business model,鈥� says at the University of Exeter, UK. 鈥淚ndividuals pay to have the DNA test done, and say they are happy to participate in research, and then 23andMe sell the data to pharma. They鈥檙e making money on both sides.鈥�

23andMe is upfront about its collaborations, and users can opt in to volunteer their data for research 鈥� as around 80 per cent of its customers currently do. 鈥淵ou鈥檙e free to answer as many or as few surveys as you like,鈥� says a spokesperson for the firm.

If you opt in, your genetic information could be used over and over again, for multiple research projects. And it could be reanalysed in more advanced ways once new genetic tools are developed. The information you get back from your spit sample could be a tiny fraction of the total collected.

So where is your cut of the profits? White thinks we should have more control over our valuable genomes. 鈥淚鈥檇 hope to have a robust marketplace that gives you the opportunity to sell your own data,鈥� he says. 鈥淚f a drug [developed using your genetic information] gets sold, there鈥檚 no reason why you shouldn鈥檛 receive a micropayment.鈥� His company, Sure Genomics, will not share their customers鈥� data, he says.

鈥淚t seems fairer,鈥� agrees Frayling. 鈥淢aybe we should all get together and say: 鈥榶ou can only have the data if we get a cut鈥�.鈥�

But it is difficult to say how much an individual genome 鈥� along with personal health information 鈥� would be worth. 鈥淪tudying one person鈥檚 genetic information is not useful,鈥� says the 23andMe spokesperson. 鈥淲hat鈥檚 valuable is putting it with survey information. All of the information is de-identified and studied in aggregate. So it鈥檚 tough to place a value on one person鈥�

鈥淭he information you get back from your spit sample could be a tiny fraction of the total collected鈥�

But the data鈥檚 value is clear. 鈥淎 drug is twice as likely to make it through the pipeline [to market] if it is based on human genetics,鈥� says Frayling. 鈥淕iven that a single drug costs around a billion dollars to develop, the information could save them half a billion dollars.鈥�

Some argue that in the long run, everyone benefits from research, so we should all be donating our information to the cause. It is true that 23andMe鈥檚 database has already contributed to new results helping researchers understand the effectiveness of antidepressants and the causes of infertility and male-pattern baldness, among others.

Unsurprisingly, this is the view that many of the companies themselves hold. 鈥淚鈥檓 biased, but I feel that the more information we have, the better it is for everyone,鈥� says Marcie Glicksman, the Chief Scientific Officer of Orig3n, who is also a customer of 23andMe. 鈥淩esearch and development is expensive 鈥� people should be altruistic.鈥�

In the meantime, if you are thinking about buying one of these kits, it鈥檚 worth considering what you will get out of it. Finding out about your ancestry can be interesting, but you only have to go back a short way through human history to find ancestors common to everyone living in your continent.

More seriously, learning that you have an increased risk of disease can be dangerous information. Most of the companies do not offer genetic counselling, and it鈥檚 unlikely that your doctor will have the necessary training to make sense of your results. Many people don鈥檛 change their lifestyle even when they find out they are at risk of diseases like diabetes, while others can overreact. Preventative surgery to avoid breast cancer can be unnecessary, for example.

And don鈥檛 expect a DNA test to tell you how to exercise better, says Frayling. Much of the research behind these tests is based on elite athletes, who might have a genetic variant that gives a tiny power boost. There are many genes involved, however, and each has only a very small effect. 鈥淭here is no evidence that having a certain allele means you should exercise in a certain way,鈥� he says. 鈥淭he only reason I would do those tests is for a bit of fun.鈥�

This article appeared in print under the headline 鈥淒NA tests put your genes on sale鈥�