Larry Moran will soon sit down to a Thanksgiving feast with his dad’s side of the family. A few years ago, he didn’t know who his father was. Ed Logue is planning an Alaskan cruise with a daughter he didn’t know existed until 2018. Ann Geary, raised as an only child, recently gained nine biological siblings. For all three, their relationships formed by accessing information on their genetic makings in the comfort of their own homes. The trend of consumers taking DNA testing into their own hands through DIY DNA kits has meant entertainment for some. The results have been life-changing for others, and not always for the better. Direct-to-consumer DNA testing kits have saturated the market in recent years. Mailing in test tubes of saliva for analysis has become so mainstream that some companies hawk discounted kits to holiday shoppers.
“People are interested in their ancestry,” said Dr. Bruce Korf, chief genomic officer at UAB Medicine and a medical geneticist, pediatrician and child neurologist at Children’s of Alabama. “I don’t think it’s such a bad thing for people to be curious about their genetic makeup.”
But before opting in, consumers should be sure they’re prepared for news that may not be welcome, he added.
And as more companies provide health information along with those family ties, some genetic experts like Korf worry many users don’t understand what they’re buying into.
Rise of DIY DNA
Before the early 2000s, most genetic testing occurred in doctors’ offices for people seeking guidance on medical decisions or were ordered in courts to determine paternity.
FamilyTreeDNA, founded in 2000, was one of the first companies to offer DNA testing to help form family trees. Since then, the market has exploded with consumers eager to learn more about themselves, and companies eager to provide that service.
AncestryDNA announced it reached 15 million members in May. Another company, 23andMe, founded in 2006, now has more than 10 million customers, according to its website.
More recently and more controversially, the Food and Drug Administration allowed marketing of the first direct-to-consumer tests providing genetic risk information for certain conditions.
Now, anyone can access information on their genetic makeup with DIY kits, sometimes for less than $100, for any reason. All consumers have to do is provide DNA samples, such as saliva. The samples are then picked apart in a lab for clues.
The reasons that draw people to these kits are evolving. Some consumers come looking for hints about their ethnicity.
All human beings are 99.9% identical in their genetic makeup.
DNA testing offers clues about origins by looking at genetic variations in that other less than .1%.
For example, people with a particular background, such as Eastern European heritage, often share certain genetic patterns. Family members also have more similar DNA.
As more people buy into these DNA databases, discovering new family connections is increasingly likely.
Consumer access to DNA testing been a game-changer for adoptees unable to unseal court documents, said Anne Berg, who leads the Adoption & Mystery Kin offshoot of The Villages Genealogical Society.
“It’s made all of the difference in the world,” said Berg, of the Village of Largo. “People who thought they could never find their biological relatives are now finding them at the age of 70 or 80.”
Logue, for instance, initially took a DNA test for insight on his ethnic composition.
His results came in as about 50% Irish and 50% Danish, pretty close to what he’d expected.
He received the news about his unknown child about a year later.
Logue wasn’t looking because he had no idea he’d fathered a child. But his daughter, Montel Graves, had been searching for her birth parents since she was 18.
Years later, Graves’s daughter gave her a DNA kit for Mother’s Day.
Logue already was in the system, coming up as a match for her father. He has no other children.
“I didn’t know I had a daughter,” Logue said. “Now I have a daughter and I have four grandchildren and three great-grandchildren. Overnight, I have a full family.”
Geary didn’t have any brothers or sisters growing up.
She always wondered why she didn’t resemble anyone else in the family. So when she was about 12, she asked her mother who she looked like.
‘“She looked at me very seriously and said, ‘You look like your mother, but please don’t talk about it,’” recalled Geary, of the Village of Collier.
Decades later, Geary’s son convinced her to take a DNA test.
She eventually connected with two brothers on her birth mother’s side and seven siblings on her dad’s.
Although she never got to meet her parents, connecting with the children they raised has helped her get to know them.
“It’s nice to find out where I came from,” Geary said.
Moran had searched for answers about his father since finding out a family friend was actually his birth mother at age 13.
But when he asked his birth mother who his father was, she gave him incorrect information, saying he had died, Moran said.
DNA spilled the truth, and he’s since connected with cousins from his father’s side, whom he said welcomed him with open arms.
Moran, of the Village of Virginia Trace, remembers memorizing the DNA molecule in a zoology course as a college student.
“Little did I know that DNA molecule would change my life at 73,” he said.
Logue, Geary and Moran were all invited into their newfound families.
Not everyone is as lucky, said Bill Allen, an associate professor at the University of Florida who serves on the UF Genetics Institute Executive Committee.
“I know people who have discovered that they were adopted — they did not know,” he said. “They went and found their birth parents and the birth parent wanted no relationship at all at all, and they just felt rejected.”
Such unhappy reunions can be especially possible for anonymous sperm and egg donors, who signed up on the condition that they would not be known as the biological parent.
“That was when it was thought that anonymity can be maintained,” Allen said. “It’s not necessarily guaranteed now.”
Even people who haven’t used a kit might still have identifying information in a database if a relative has shared theirs.
Investigators seeking the Golden State Killer in California tracked down the suspect last year using information from a relative that had been uploaded to a public database.
Similar methods were used recently in Florida to find the suspected Daytona Beach Serial Killer.
However, most companies now protect users’ information from such access by law enforcement.
GEDMatch, the third-party DNA company used in the Golden State case, updated its policy in May so that users must consent to having their DNA matched to kits uploaded by police.
There are privacy concerns for users who haven’t committed a crime, said Carmen Wiley, president of the American Association for Clinical Chemistry.
In 2008, Congress passed the Genetic Information Nondiscrimination Act (GINA), which prohibited discrimination by employers and health insurers based on genetics.
“What people don’t know is that it does not protect against long-term disability or life insurance,” Wiley said.
Some also question the security of DNA information uploaded to these websites. Earlier this month, Veritas Genetics, a DNA testing startup, announced a security breach by an unauthorized user. The exposed information didn’t contain genetic data, DNA test results or health records, Bloomberg reported.
In addition to potential privacy issues, medical professionals are concerned consumers have growing access to medical information they may not know how to interpret.
Health Clues From Genetic Code
In 2013, the Food and Drug Administration sent a warning letter to 23andMe for giving consumers medically diagnostic information in their DNA kits without its approval.
Four years later, the FDA approved the first direct-to-consumer tests that provide information on genetic risk for certain conditions.
There are downsides to this expansion of consumer DNA testing, said Christine Steele, a certified genetic counselor at Moffitt Cancer Center.
Some consumers overestimate the breadth of information they’re receiving, she said.
For instance, 23andMe offers information on presence of the BRCA genes, which can be associated with a higher risk for developing breast cancer.
Steele said she’s had patients say they almost didn’t come in to Moffitt because their results from an at-home kit came back that they didn’t have those genes.
They don’t realize the test only looks at a few mutations of those genes, she said.
“There are over 1,000 different mutations in those genes,” Steele said. “So there’s a lot of information missing from these tests and it can be very misleading.”’
Allen cautioned consumers to beware of companies that use the scientific weight of DNA to make money off customers.
“There are some scam organizations that are selling what they claim to be DNA testing that will tell you whether you need certain vitamins or supplements, and their test results show what you need, and they just happen to sell those very same vitamins and supplements,” he said.
Steele advised against interacting with companies offering free DNA testing, an ongoing scam.
The FDA only allows companies to share health risks from a limited number of genes.
But further misunderstanding can arise when consumers take raw data from those companies and upload it to a third-party site for analysis.
Deborah Cragun, director of the genetic counseling graduate program at the University of South Florida, said her brother did that after her husband gifted DNA testing kits to her family for Christmas several years ago.
Results came back saying he had a gene mutation in a particular gene that can cause sudden cardiac death.
At first, Cragun didn’t think much of it. But then she found out her uncle had been recently hospitalized with heart problems. She dug further, concluding that the risk was real, leading to anxiety and plans for family members to be tested for a frightening cause of early death.
“Ultimately it ended up truly being a false positive,” Cragun said. “For some people (DNA testing) doesn’t end up being a gift: It ends up opening up a whole can of worms like it did for my family.”
Then there’s Logue at the other end of the spectrum, welcoming new fatherhood late in life with the same technology.
More than 15 years after the human genome sequence was identified, humanity is still unlocking the applications of DNA, Korf said.
“Little by little, that’s bearing fruit,” he said. “I think we’ve already learned quite a lot, but there’s much, much more left.”
Senior writer Ciara Varone can be reached at 352-753-1119, ext. 5395, or firstname.lastname@example.org.