Bartering with Genomes

Teksti · words

Kuvitus: Antton Nuotio

A Finnish man spat in a test tube to find out if he would go bold or get cancer. Over the past ten years, easy at-home genetic tests have had a drastic rise in popularity, even though the tester may never know whose hands their genetic information ends up in.

“Once you obtain this information, the knowledge is permanent”, states a large-lettered disclaimer inside a yellow box on the website. Next to the text is a button that might change my life if I clicked on it. A simple click reveals whether I have a higher-than-average genetic risk to develop some of the western world’s most feared diseases.

How will this new information affect the rest of my life? Do I even want to know? I drag the cursor closer to the button.

At the turn of the decade, the first companies launched easy, cheap and quick direct-to-consumer genetic tests. These at-home tests, orderable online, shed light on the information encoded in anyone’s DNA.

There are dozens of different tests on the market. They promise to reveal what kind of genetic traits the tester has and the risk they have to develop different diseases, for instance. Some tests also give information about the tester’s family history or, for example, which routes his or her ancestors have wandered for thousands of years when venturing out of Africa.

The tester only has to send the company offering the service a small amount of his or her saliva.

Some tests promise even more detailed information: does the tester have a predisposition for alcoholism, which sport they are best at, how they should eat or when they will start menopause. One company offers information on whether the tester is more aggressive than the average person when drunk.

Another sells an infidelity test for 300 euros, for which a used condom, a scrap of a bed sheet or a pair of underwear is sent in and tested for signs of a stranger’s DNA.

At-home genetic tests sound like sci-fi, and TIME Magazine dubbed retail tests and their futuristic promises the Best Invention of 2008. The marketing phrases of the companies offering these tests assure that the results can help us “learn to know ourselves”, to find out where our “roots truly lie” and to “know our very core”.

The industry’s biggest companies are from the United States, but several firms seek out a Finnish market or are Finnish-founded. The Finnish company Medigoo has been in business since 2007.

In addition to genetic testing, the companies operating in Finland offer, according to their own words, wellness coaching or guidance on making a lifestyle change.

“We offer our clients a chance to know more about themselves and improve their own health and wellness”, says Medigoo’s COO Marko Karhiniemi.

“We can tell about a tester’s oxygen consumption, their muscle fiber type, the workout or diet that fits them. We also offer tests that examine risk factors for developing diseases like Alzheimer’s or Parkinson’s, cardiovascular disease or harmful blood clots.”

Genetic testing companies seem to promise answers to life’s ultimate questions. Who are you? Where do you and your family come from? And above all: where are you going?

Despite grand promises, direct-to-consumer genetic tests and their benefits have been controversial ever since their emergence on the market. Actors in the industry assure that the tests are reliable, but are at the same time obligated to stress that they cannot replace a medical diagnosis. One should not, for example, change their medication based on the results.

Although the methods of testing in retail genetic testing are nowadays very reliable, what is questionable, are the results they offer.

“Very few diseases or biological or cognitive traits are directly dictated by our genes”, says doctoral candidate and physician Pietari Ripatti. He researches the genetics of cardiac disease at FIMM, the Finnish Institute for Molecular Medicine.

“Practically almost all human traits and diseases are multifactorial, meaning that they are also affected by lifestyle, environment and chance”, Ripatti says. It is impossible to predict obesity or alcoholism solely based on genetic information.

In some cases, genes may give insight to the risk factor for developing feared diseases, like Parkinson’s or cancer. However, the levels of risk vary.

“In the case of heart disease, genetics constitute approximately half the risk, whereas in, for instance, Parkinson’s and different cancers, the contribution of genetics is much smaller.”

But what good does knowing one’s risk to develop a disease without a cure do?

“Might it only bring life-long grief?” Ripatti ponders. Alzheimer’s, cardiac disease, as well as cancers, may be preempted with good lifestyle choices, regular exercise and a balanced diet. “We should all follow these lifestyle choices regardless of genetic tests.”

Ripatti is also skeptical of what some genetic tests promise to deliver. “It’s hard to believe that an ideal workout routine or diet could be determined based on one’s genes. Each genetic test is exactly as reliable as the medical research behind it, and the effects of genes on training are surely much less studied than serious diseases.”

Despite all this, the popularity of at-home genetic tests is on the rise. According to experts, the industry will grow to dozens of billions in worth in the next few years. Finnish consumer genetics company Blueprint Genetics raised 14 million euros in a funding round in July.

The reason behind the popularity is the ease of testing and the quick decrease in prices.

“The price of genetic tests has dropped to about one-hundred-thousandth in the past 20 years. Now, analysing a regular broad at-home test in a laboratory costs the companies only twenty euros”, Ripatti says. A consumer can purchase the service for 150 euros.

Furthermore, a growing interest in genetics and wellness trends is also growing the market. “It’s only 15 years ago that the whole at-home genetic testing market didn’t even exist. Nowadays consumers are increasingly interested in their own health”, Karhiniemi from Medigoo says. “People no longer want to go to the doctor’s to get treated. They prefer preventing health issues and taking care of their wellbeing.”

Testers sharing their results has been a part of my Facebook and Instagram feeds for quite some time now. There has been hype on social media about how taking a test has revealed everything from optimal coffee consumption to sprint training being the ideal workout. A friend of mine bought his entire family genetic tests as Christmas gifts, as the results can be merged on an online service to get even more accurate information about the family’s genes.

Judging by my own social media feeds, genetic tests are mostly taken by fit and successful trendsetters. I want to be part of the club, too!

I purchase a broad gene testing kit from the American company 23andMe. The firm is one of the industry’s biggest and most known actors, sponsored by, among others, Google. 189 euros vanish from my credit card and the test kit is said to arrive in a couple of weeks.

Soon, a cardboard box decorated with colorful illustrations of chromosomes awaits by my front door. From inside the box slides out a plastic test tube with a capsule of blue liquid attached to it.

The strict instructions direct to drip a few milliliters of saliva into the tube and then insert the preservative capsule in the mucus. Finally, the tube is to be packed into a bag marked with a triangular biohazard symbol and sent to the laboratory for analysis.

Of course, companies offering genetic tests are not doing charity, but strive to turn in a profit also in ways other than the direct-to-consumer service.

Depending on the terms of service, companies may give out anonymous genetic data for medical research. The studies examine which genes are more common on diseased persons and assess which genes predispose to disease. The information can help develop treatments for diseases.

Often genetic testing companies sell their clients’ anonymous information to pharmaceutical manufacturers and insurance companies. Pharmaceutical companies purchase genetic data customized for their needs for the purpose of product development. Companies can also public genetic databases maintained by, for instance, universities, but private data compiled by the pharmaceutical company itself provides a competitive edge.

Insurance companies, on the other hand, strive to make their clients’ risk assessments as accurate as possible. Genetic data can be used to examine the prevalence of different disease and accidents in different demographics, and consequently, better estimate the price of an insurance.

23andMe promises to keep my genetic information safe on its high security servers and assures that the data it sells on is anonymous. This is soothing, but that which applies to uploaded information also holds true for genes. Once the tube of saliva has been sent in, I can never have my genes back.

I stare at the test tube and doubt enters my mind. Do I understand all the consequences the test could have as years pass?

Although genetic testing firms exercise a rhetoric of benevolence, even the best secured servers can be broken into and human errors can be made. Instead of celebrities’ leaked sex tapes, will their leaked genetic data be our next guilty pleasure? Do I really want to take the chance that my highly personal information might end up somewhere for all to see? The data could give insight to diseases that run in my family or it could reveal that my father is not my actual father.

It feels like a distant thought, but my genetic data might have many takers. In the future, various actors from insurance companies to universities might ask people to voluntarily give up their genetic data. My future employer might be interested in the genes connected to my intellectual abilities.

Luckily there are laws in place in North America and the EU that forbid discrimination based on genes, but different what-if scenarios are frightening regardless.

For example, a genetic testing company can go bankrupt, in which case the data owned by it could end up in the hands of another firm. Even if I had given my data to a Finnish company, my genomes might wind up in the possession of a multinational company abroad.

The genetic information I give up by taking a test could even lead to a relative of mine being imprisoned. Michael Usry from New Orleans ended up in the public eye in 2015 for being suspected for a kill because the DNA found at the crime scene was very close to his father’s DNA. Years earlier, Usry’s father had given his genes for a study, and the police had made the connection through a public genome database.

The charges against Usry were eventually dropped, but the case is a reminder that, with a court permission, gene testing companies have to give up a suspected tester’s information to authorities.

”Do I share the results with my siblings? What about my girlfriend?”

After long consideration, I choose to be a trendsetter that does not shy away from an exciting opportunity to gain more knowledge about his own genetic heritage. I send in the sample for analysis.

After seven weeks I receive an e-mail notifying me that my results are ready. I log in to a system that presents me results about my ancestry, my traits and my wellness.

I learn that from my mother’s side, my ancestors traveled to Northern Europe at the end of the Ice Age some 15,000 years ago, and that my father’s ancestors originate from Siberia. Apparently, my ancestors have not been too prejudiced, seeing that as much as four percent of my ancestry is from Neanderthals.

As for my genetic traits, I have fair hair, blue eyes, I metabolize caffeine quicker than average and I do not dislike bitter taste. I most likely will not develop male pattern baldness and I do not have a unibrow.

I click open the wellness section. It lists my risk factors for different diseases and hereditary problems. A 72-point list of different diseases and predispositions told by the story of my genes is slapped on the screen. It takes me a while understand the list, but in the end, the results are rather straightforward: my genes are plain ordinary by every measure.

I have to make a separate click to find out my risk factor for Alzheimer’s and Parkinson’s disease and breast cancer.

The page gives me a warning: “Remember that your results also affect your relatives”, “men, too, can pass on breast cancer genes to their children” and “don’t make decisions on procreation based on this test.”

Although I am aware of the indefinite nature of genetic tests, I ponder whether I should take a look. Do I share the results with my siblings? What about my girlfriend? On the other hand, am I too far in to chicken out now?

I quickly click the page open and muster the courage to check the results: I do not have a predisposition for any disease, my risk factors are regular.

I feel relieved, but at the same time, empty. What did this test really give me? Entertainment, for one. It was interesting to go through the results, even though I do not need a test to tell me I have thick hair or lactose intolerance. The information about my ancestors’ migration was mostly a fun story to tell my parents.

But was it worth giving my genes to a multinational company to use and share? Perhaps I truly was a trendsetter, and in the future everyone gives up their genetic information already in the maternity ward to gain better treatment or more accurate insurance terms. Just ten years ago, many would not have believed that we would soon be voluntarily giving detailed information about our lives to Facebook, Amazon and many other corporations.

Maybe you too will have soon given your genes to Google, along with the rest of your information. Welcome to the club.