Read this first before giving genetic test kits gifts
Highwood, Ill. -- This holiday season, Nicole Gemmato hopes to settle a long-running family feud, once and for all.
What is her family’s heritage? Is her family Irish, Swedish, German, French, Italian, Dutch or all of the above? Her relatives have argued about it for years.
The Highwood woman plans to give genetic testing kits to her cousin and sister as gifts. They’ll each spit in a tube, mail it off to be analyzed, and get some answers.
“I just think it will be interesting to see what we are for real,” said Gemmato, 41. “We don’t really know what we are.”
In recent years, direct-to-consumer genetic tests have grown in popularity, including as holiday gifts. Companies that sell the tests tout them as ideal presents and offer seasonal discounts on their websites.
Some tests tell a person where his or her ancestors lived 1,000 years ago and can potentially help the person connect with distant relatives. Other tests reveal quirky, if not terribly useful, information, such as a possible preference for sweet or salty foods, earwax type or whether a man is genetically inclined to have back hair.
More serious genetic issues can be uncovered too, such as whether a person has genetic variations associated with a higher risk of late-onset Alzheimer’s disease, breast cancer and Parkinson’s disease.
Tangled up in all this are issues of privacy, emotional well-being, insurance eligibility and health.
Uncle Steve, for example, might not feel comfortable giving his genetic information to a third party. Cousin Leticia might not want long lost relatives to find her. And grandma might not want to know if she’s at higher risk of developing a serious, incurable disease — especially as a Christmas present.
It’s a gift that’s not quite as straightforward as a new pair of socks.
But an increasing number of people are gifting the tests. Ancestry said it sold a record number of AncestryDNA kits in November, a month that included major holiday shopping days Black Friday and Cyber Monday.
The market for direct-to-consumer genetic tests is expected to grow to $611 million by 2026, up from $117 million in 2017, according to Credence Research. This time of year, the price of the kits can range from less than $40 to more than $200. Many of the kits advertised as holiday gifts sell for $50 to $70.
“It’s a pretty unique experience,” said Stacey Detweiler, a medical affairs associate and genetic counselor at 23andMe, which doesn’t disclose sales. “Some people are really interested in looking toward maybe the past, maybe their ancestry, where they’re from. Other people are maybe a little more interested in the future.”
23andMe, founded in 2006 and one of the more well-known companies, offers tests that can tell a person how much of his ancestry can be traced back to Neanderthals, the time at which he’s mostly likely to wake up in the morning (without an alarm clock) and whether his hair is likely to get lighter in the sun, among other things.
The test can’t tell a person whether he has those traits for sure, but rather how likely he is to have them. Other companies also test for traits.
Similarly, a number of the tests also can tell a person if he or she has certain genetic variants associated with higher risk of certain diseases. But doctors and the testing companies warn that having those variants doesn’t mean a person will get the disease. Other factors play a role as well, and there’s no test that can explain all those factors, said Dr. Peter Hulick, medical director of NorthShore University HealthSystem’s Mark R. Neaman Center for Personalized Medicine.
Also, the absence of those genetic variations doesn’t mean a person won’t get the disease.
“Genetics isn’t destiny,” Hulick said.
Before taking tests, people should also consider the emotional consequences of finding out they might be at higher risk of getting certain diseases, especially illnesses with no cure, such as Alzheimer’s or Parkinson’s, said Sonia Suter, a law professor at The George Washington University who studies law and genetics.
“I do feel that a lot of people are getting these tests because it seems like a fun cocktail-party thing to do,” said Suter, who worked as a genetic counselor before becoming a lawyer. “But do you want to know if you have a predisposition to Alzheimer’s? Is this information really going to be of value to you?”
Ideally, someone who takes the tests will consult a doctor or genetic counselor about the results, said Lori Frank, a member of the Alzheimer’s Foundation of America’s Medical, Scientific and Memory Screening Advisory Board. Some companies, such as Helix, include genetic counseling with their tests. Others, such as 23andMe, do not.
Another consideration before wrapping up the kits as gifts: privacy concerns. 23andMe raised eyebrows earlier this year when pharmaceutical company GlaxoSmithKline announced that it had invested $300 million in 23andMe as part of a collaboration aimed at developing new medications using 23andMe’s data. The companies plan to share in the proceeds from any new medications or treatments that come out of the partnership.
23andMe lists a number of other collaborators as well, including the University of Chicago, pharmaceutical company Pfizer and biotechnology company Genentech.
23andMe says that it doesn’t share, sell or lease any data to its collaborators’ without customers’ explicit consent. When it does have permission to share data, the data is not personally identifiable and is shared in aggregate, according to the company. Ancestry also allows data to be used for research only with consumers’ permission, said Jennifer Utley, its director of research.
Still, the Federal Trade Commission warned in a blog post last year that consumers should recognize the risks of handing their genetic information over to a company, saying “hacks happen.”
“That tiny sample can disclose the biological building blocks of what makes you you,” FTC Bureau of Consumer Protection senior attorney Leslie Fair wrote in the post. “The data can be very enlightening personally, but a major concern for consumers should be who else could have access to information about your heritage and your health.”
That’s part of the reason Victoria Ghanem, of Lincoln Square, still hasn’t taken a genetic test she bought months ago. She purchased one for her husband as a gift and one for herself. The tests are sitting unused in her kitchen cupboard.
She thought it would be fun to learn more about her ancestry, but she started having second thoughts after the tests arrived.
“Even if they promise privacy, you see all these companies having data breaches,” Ghanem said. “You can change your credit card number. You can’t change your DNA. It’s out there forever.”
Some people also worry that their genetic test results might be used against them or their family members.
Earlier this year, police found the Golden State Killer, who had eluded them for decades, by placing his DNA information on a genealogy website. They used the killer’s DNA to find his relatives in the database, and ultimately to identify him.
Some results could also hurt a person’s ability to get certain types of insurance. A federal law, the Genetic Information Nondiscrimination Act, keeps health insurers and employers from obtaining a person’s genetic test results or making decisions based on those results. But that law doesn’t apply to life insurance or long-term care insurance. And Illinois law also doesn’t seem to offer additional protections when it comes to those types of insurance, Suter said.
Still, people don’t have to give — or burden — their family members with revelations about their health that they might not want. The genetic testing companies typically offer a number of options, including tests that stick to ancestry or more frivolous matters, such as freckles or ability to match musical pitch. Recipients of 23andMe kits, for example, can also opt out of receiving the more ominous test results.
Samantha Marwick gave her parents genetic testing kits as gifts, but her mom only focused on finding out about her heritage, not the medical results.
“It freaked her out too much,” said Marwick, of Glenview.
Her parents liked the kits, though, so Marwick, 39, is giving one to another relative for Christmas this year.
“I thought, ‘What do you get someone who has everything?’ ” Marwick said. “I think it’s kind of an interesting gift, as long as you feel someone would be open to it.”