What Ancestry is doing with my biometric data
I once sat with my grandmother and asked her about my ancestors. I’m a quarter Norwegian, I was told, as were both of my parents before me, and though I have never been to that place, I’ve long loved the idea of being from the land with the dark and the grass and the sea.
It should be noted, that the remaining 75 percent of my bloodline was of a yet indeterminable variety, and it is for that reason I clung to that 25 percent, thinking myself descended from some farm in the countryside, where grasses grew tall and swayed in the sea breeze.
My grandmother confirmed as much, giving me the name of the farm her family was from, and a story about how they sailed across the Atlantic in 1865, writing it down on a piece of paper so that I might further research it at a later date. “Now that you’ll be moving to Utah,” she told me, “you’ll be able to learn the rest.”
I didn’t know what my grandmother meant back then, though I soon found out when I moved. Genealogy is a big deal in Utah, and there are more than a dozen companies here who specialize in it. (Something about the Church of Jesus Christ of Latter-day Saints’ penchant for post-mortem baptism, as it turns out―”Mormons take these names of ancestors who died hundreds of years ago, they take them into the Mormon temples, and they perform religious ceremonies or ordinances for these deceased people, that’s why it’s part of their beliefs to seek out their ancestors,” says Kevin Steadman, owner of Universal Genealogy).
Starting with the largest in the space, I decided to give my saliva to Ancestry, hoping that, despite the long list of disclosures I was required to sign (may I never be cloned and sold for parts), I would learn something about myself and those who came before me. A whisper of those I never knew, yet who shared my bloodline nonetheless. Did I inherit their obscure philosophies, I wondered darkly, or their predispositions for cancer?
Only Ancestry could tell me. I was able to trace most lines of my ancestry back to the 16th and 17th centuries merely by entering three generations of my family tree into the website. This is probably your great grandfather, it would tell me, this is probably his father. And each new piece of information came corroborated with pictures other family members uploaded to their profiles as well as records of their baptisms, marriages, and immigrations.
The records gave me a somewhat abstract picture of where my family is from, and how they came about getting here. Apparently the vast majority of my family lived stateside as far back as the 1600s and both sets of parents had ancestors on the Mayflower (it seems they knew each other, as it turns out).
My father’s side were early settlers of this country. They were puritans, reverends, and governors. Their houses are still standing as historical landmarks and their belongings are on display at the Louvre. My mother’s side were a bit more nomadic, they were the leftover descendants of bygone monarchs who pioneered their way out west in search of a new life. They sold sugarcane in Barbados, earned their fortunes in California gold, and died in raids by Indians.
These archetypes fit my families quite well and gave context to the worlds that created me. Perhaps I inherited something of them after all, I thought.
Eventually, my DNA results came back and confirmed what, by this point, I already knew: I am 61 percent English, 19 percent Norwegian, 13 percent German, and 4 percent Swedish. The only twist in the Northern European cocktail of my ancestry appears to be a Turkish pirate who married a Morrish woman in the 17th century, and whose son became the first Muslim in America. I am also the product of two Indian tribes, though the consensuality of those relations remain a mystery.
Though there wasn’t anything particularly unusual in my DNA results, I found it very interesting how much Ancestry now knows about me. Perhaps even more than Apple or Google combined (and, let’s face it, my Google Home has overheard my every conversation, and the facial recognition software on my iPhone has seen me in every state of indisposed). Which brings me to a very of-the-times question: what is being done with all that data?
There are plenty of not-so-conspiracy theories floating around about the harmful uses of biometric data. There’s the potential for health insurance premiums to rise based on findings, for instance, or for murderers to be caught using my DNA results. But there’s also good that can result from knowing so much about oneself―especially as our genetics pertain to our future health and wellbeing.
For instance, what if our doctors could, through genetic testing, see the cancerous trends toward which our bodies were trending and stop those malignant cells from ever developing? What if our prescriptions came, not in the form of pills, but in the number of steps we should walk in a day or a particular vitamin our body wasn’t getting enough of? What if we could have our bodies so thoroughly mapped, that we could tweak it as needed and avoid any imbalance that could ever occur by correcting them as they develop?
Scientists are attempting to bring about that reality. One study documented in the New York Times strapped accelerometers to 16,000 women in their 70s and discovered a trend: The least active women averaged 2,700 steps in a day, and those who averaged only 1,700 steps more than that “were 41 percent less likely to die of any cause.”
Just as my ancestors took that first step and sailed across the Atlantic ocean in pursuit of a new world, so too are today’s scientists fervently working toward that next discovery. A gold rush that comes not in the form of monetary, but biological gain. Giving us, not fame or fortune, but time
AncestryHealth Core is the behemoth’s first foray into that new world. An upgrade to their traditional DNA test, this one looks specifically for variants that can be linked to known health conditions―the presence of BRCA1 and BRCA2, for instance, can indicate a predisposition for breast and ovarian cancers.
The test can also identify variants that put an individual at risk for heart conditions such as cardiomyopathy, familial hypercholesterolemia, hereditary hemochromatosis, and hereditary thrombophilia, as well as those that reveal whether or not an individual is a carrier for cystic fibrosis, sickle cell anemia, and Tay-Sachs disease.
AncestryHealth Plus is their premium offering, which reports similar findings but using more granular testing methods. Instead of testing selected genetic locations within an individual’s DNA, as the core option does, the plus option tests many more, increasing the odds of finding those genetic markers. More needles in the haystack, if you will.
I took the test and discovered I have zero markers for the tested diseases, which Ancestry says puts me at “typical” odds for developing any of them. I still have, for example, a 13 percent chance of developing breast cancer as a female without a family history; but according to 27 gene differences tested for BRCA1 and BRCA2 differences, no differences were found.
What this means is that Ancestry now knows where I am from, everyone I’m related to, the diseases I’m predisposed to, and maybe even how long I’m going to live (I calculated my average life expectancy from among my known ancestors and found it to be 85 for my great-grandparents generation, 76 for my great-great grandparents generation, and 78 for my great-great-great grandparents generation. What can I say, despite 17th-century ailments and a spattering of failed river crossings, my family is pretty darn long-lived.)
But despite all the data now available to us, how can it actually help us?
Ancestry is working on an answer. More interesting to me than my cancer risks was the test’s “wellness report,” which specified that, according to gene differences discovered in my test, I may be predisposed to lower levels of beta-carotene―which could affect my eye health. It also provided me with a list of the foods most high in beta-carotene (beef livers, apparently―no wonder I’m not getting enough).
The report also was able to determine that “people with DNA differences like mine,” tend to break down caffeine more quickly, and thus consume more caffeine than average; that that I’m likely to have typical levels of Omega-3s and vitamins B12, C, D, and E; and that “based on my DNA, I’m probably not lactose intolerant.” (I do, however, have a food intolerance to dairy proteins, but that’s from a different day and a different test. As Ancestry clarifies: “It’s also possible to have other digestive problems that make it hard to digest dairy products.”)
Diagnostic tools like these are on the rise. Our saliva can be tested for cancer and heart disease, our blood can be tested for food intolerances and vitamin deficiencies, our urine can be tested for heavy metals, our stools can be tested for microbiome and gut health, and many of us wear diagnostic tools on our wrists―Apple watches and FitBits track our steps, sleep, and heart rates, among other barometers.
The problem is: our diagnostic capabilities are far surpassing our curative abilities. “There are all sorts of diagnostic tests and there are lots of things being marketed to consumers directly, and some of those are things that are not linked to that type of action,” says Wendy Kohlmann, the director of genetic counseling shared resource at the Huntsman Institute. “Some of these direct-to-consumer companies are offering tests for genetic changes that have not been well validated, or are for a condition in which there’s nothing we can do to really mitigate that risk.”
I can, for instance, discover (with limitations) whether there are differences in my BRCA1 and BRCA2 genes, and we do have an understanding that those differences can be linked to HBOC syndrome which increases the chances of hereditary breast and ovarian cancers, but it is still too soon to understand what can be done to reduce my risk of developing them apart from increasing regular screenings or removing body parts that are at risk.
“We use the term ‘clinical utility’ to say that this test is going to change something that we do,” says Kohlmann. “And right now, most of the tests that have clinical utility would be changes that cause a more significant risk for developing a disease. In which, this person’s chance of getting a disease is much different than the average person.”
In this case, a genetic counselor might recommend more drastic interventions. “For cancer risk, screening for early detection is really our number one approach. There are certain genes that cause a really high risk, like BRCA1 and 2 where surgery to remove breasts or ovaries can be considered. There are some situations in which medications can help reduce the risk. Medications like Tamoxifen can help reduce breast cancer risk, and aspirin for colon cancer risk.”
But apart from these more severe action-items, she says, there isn’t much we can do with that data to prevent disease―at least not that she wouldn’t recommend to everyone, regardless of test results. “Genetic changes really account for a small fraction of our overall risk,” she says. “Our diet, our lifestyle, our environment, those things are still playing a role. It’s not as though, if someone discovered they didn’t have any genetic markers [for disease] we would say ‘you don’t need to worry about it, you don’t need sunscreen, it doesn’t matter what you eat.’ We would never recommend that someone doesn’t need to do those things.”
The future I environed for our health? The one where our data works both ways, and our preventative abilities are just as powerful as our diagnostic abilities? That’s not yet here.
“We can all benefit from maintaining a healthy weight, being physically active on a regular basis, and eating a balanced diet,” Kohlmann says, “But the data is not to the point where, based on your genetic factors, we would have a different lifestyle recommendation. We wouldn’t be able to say, for instance, this person needs to eat more apples and that person needs to eat more broccoli… Maybe we’ll get there one day, but we’re not there yet.”
Despite all the data available to us, it appears that right now, all diagnostic data leads to the same set of recommendations: eat more vegetables, eat less meat, move your body regularly, get better quality sleep, wear sunscreen, and get regular screenings. But there’s the hope that someday―not too far off from this one―we’ll be able to do so much more.