Futureface

by Alex Wagner

  For instance, if the…risk assessment for breast or ovarian cancer reports a false positive, it could lead a patient to undergo prophylactic surgery, chemoprevention, intensive screening, or other morbidity-inducing actions, while a false negative could result in a failure to recognize an actual risk that may exist. Assessments for drug responses carry the risks that patients relying on such tests may begin to self-manage their treatments through dose changes or even abandon certain therapies depending on the outcome of the assessment.1

  Unnecessary mastectomies, forsaken drug therapy—the FDA was concerned that this could turn very dark, very quickly. In late 2013, the feds put the kibosh on 23andMe’s carrier gene testing services, which had—until that point—been the company’s focus.2 Less than a week later, the company was hit with a class action lawsuit, alleging that the science was faulty and hadn’t received the necessary approvals, and that the test results were being compiled into databases that were then sold to third parties.

  According to the lawsuit:

  Defendant uses the information it collects from the DNA tests consumers pay to take to generate databases and statistical information that it then markets to other sources and the scientific community in general, even though the test results are meaningless.

  In the summer of 2016, a federal appeals panel of three judges affirmed a lower court decision saying the lawsuit had to be settled privately in arbitration, rather than publicly and in court. Writing the opinion, Judge Sandra Ikuta pointed to the fact that, in order to use the test, customers had to agree to 23andMe’s terms of service—which contained a provision stipulating that disputes had to be settled out of court.3

  In the wake of the FDA’s decision in 2013 to put a halt to the company’s health testing, the rate of new customer sign-ups dropped in half. Faced with a potentially devastating loss of business, 23andMe pivoted to the business of DNA-based ancestry reports (plus Neanderthal Percentage Breakdowns).*3 In the words of 23andMe’s senior director of research Joanna Mountain, “We started out with focus on health—and ancestry testing came along for the ride.” This pivot was possible because, apparently, in the eyes of the regulators, information about possible Croatian ancestry was less explosive than being told you were a carrier for Tay-Sachs disease. And so this became a strategy to stay in the business of DNA without worrying that inaccuracy might somehow lead to someone’s untimely demise. And it worked. By late 2015, the company had more than a million users, double what it had at the time of the FDA’s kibosh.4

  If 23andMe had come to ancestry services in circuitous fashion, the even more unlikely story was that of AncestryDNA, a genealogical search service run by industry heavyweight Ancestry: a for-profit company whose founders were members of the Church of Jesus Christ of Latter-day Saints. Many of the largest online genealogical databases are connected to the church, though it’s a fact that is not exactly promoted by the Mormons. For example, FamilySearch.org, another Web-based genealogical networking and research site, is a project of the LDS church. While the church doesn’t hide this fact, it doesn’t exactly trumpet it, either: At the very bottom of the home page, in tiiiiinnnnny letters, is written the following:

  © 2016 by Intellectual Reserve, Inc. All rights reserved. A service provided by The Church of Jesus Christ of Latter-day Saints

  You could be forgiven for not having any idea that the website had anything to do with Joseph Smith. Ancestry—makers of one of the three leading DNA tests—is likely to become a publicly traded company again after being taken private, but it retains certain loose associations with the LDS church: Two of its former heads were Mormon, its corporate headquarters are in Lehi, Utah, and the church and the website announced in 2014 that LDS Family History Centers worldwide grant members of the public free access to Ancestry’s formidable digital archives.*4 What’s more, the same year, it was announced that members of the LDS church are also granted free subscriptions to the Ancestry.com worldwide site (as well as FamilySearch.org partner websites)—there’s even a special registration page for LDS members. Which is all to say: pretty nice deal, if you’re Mormon or find yourself hanging out at Mormon community centers.

  Why, exactly, do Mormons keep coming up in the context of genealogy?

  Mostly because the church has decreed that the dead can be posthumously baptized into the faith, as a way of strengthening and expanding God’s eternal family—which creates a need for a scientific way to trace and discover long-lost (and oftentimes deceased) relatives. Today, the Church of Jesus Christ of Latter-day Saints is to genealogy what the NFL is to American sports: unquestioningly the most powerful and profitable enterprise, with the most resources and the biggest audience. Mormon-run ancestry and family tree services have achieved dominance and extraordinary profitability on their own merits (the church registry itself has more than two billion names that have been traced) but also because the questionable stuff—the religiously specific stuff—is largely kept behind the scenes. Except (like with the NFL) when controversy splits the whole thing wide open.

  In the case of the Mormon church, the most controversial practice to infect its ancestry wing is the practice of posthumous baptisms known as temple ordinances: baptizing the souls of deceased people using living stand-ins. If you weren’t Mormon, the practice of posthumous baptisms first became widely known in 1995, when evidence came to light that the LDS church had performed temple ordinances on as many as 380,000 Jewish Holocaust victims5—as well as prominent non-Mormons, including Pope John Paul II and Gandhi*5—and later entered those names into the church database.6 Effectively, if privately, the Mormons were calling the head of the Catholic church one of their own.

  Faced with an onslaught of ohhellno from the Vatican to Temple Beth Zion,7 the church vowed to stop the most egregious posthumous baptisms, if not the practice itself. In fact, they couldn’t really police the database, which, as of 2007, had two billion names in it. And so in 2012, perhaps it wasn’t all that surprising when The Boston Globe reported that, in addition to Anne Frank, slain Wall Street Journal reporter Daniel Pearl was among the Jewish folks that the Mormons were (still) claiming for their own. The church explained that errant members had been acting on their own accord to give the deceased “access to salvation,” however belatedly.8

  The outcry from non-Mormon religious groups was that this was a distressing practice and shouldn’t be continued. Men and women who worshipped and lived as Jews and Buddhists and Catholics and so forth might not have been thrilled to find themselves, decades later, entries on the Mormon rolls. According to the LDS website, the ordinances are important because they prepare the blessed to “live forever with Heavenly Father and our families after this life.” Not only that, but the ordinances apparently prepared blessed souls with “spiritual power and direction during mortality.”

  FamilySearch.org—which declares on its website that its “resources are helping Church members find more ancestors needing temple ordinances”—offers a basic guide to those looking to perform temple ordinances on their deceased ancestors:

  1. Find the ancestors who (still) need temple ordinances. (This can be done online at the website; a special section on “temple opportunities” informs family members whether any ancestors still need ordinances. If the direct lines seem “done”—which is to say, already posthumously baptized into the LDS church—the website encourages searching for “cousins.”)

  2. Once ancestors still needing ordinances have been identified, users can print out ordinance cards with the relevant ancestors’ names to take to the temple for baptism. Printing on standard white office paper is acceptable.

  3. Bring the cards to the temple, where a church official or otherwise qualified elder can perform the rite.

  It is all a fairly orderly process, apparently. But families like Pearl’s took issue with the memory of their son’s Judaism being somehow compromised (if not actually degraded). �
�For the record,” his parents told The Boston Globe, “Danny did not choose to be baptized, nor did his family consent to this uncalled-for ritual.”9

  And yet, in the here and now, as I contemplated the services on offer at Ancestry, and the projected costs and benefits of temple ordinance, I came to the ultimate conclusion that I was actually totally fine with it. On the most fundamental level, at least the Mormons cared. I—who had been running around in seed-bead necklaces, enthusiastically ticking off the hapa box, with little effort put into finding out who was responsible for my admissions-friendly futureface—who was I to be outraged that someone was claiming Henry Wagner for his or her own? Up until this journey began, I couldn’t have told you what year my great-grandfather was born in, or how many children he’d fathered. To be indignant about a secret Mormon baptism somewhere in Puerto Rico or Tucson seemed peevish: At least they knew his birthdate.

  Admittedly, it was easier for me to skip lightly over the issue of faith, given my own motley religious upbringing. Which led me to a secondary determination, one that had nothing to do with my own shortcomings and transparent self-loathing: If someone from another faith wanted to take a stab at saving my soul from eternal purgatory, who was I to complain? I had taken a pretty mediocre insurance policy out against the hellfires of damnation.*6 Was I going to reject free secondary coverage? Probably not.

  As it concerned my family, I contemplated the possibility that if I began using the Ancestry platform, partaking of its DNA tests and registering for its online archives, U Myint Kaung—who spent his twilight years in a monastery on a hill, renouncing the earthly pleasures of the material world in a bid to become a more enlightened Buddhist and ready his soul for its next reincarnation—might someday end up listed as a member of the Church of Latter-day Saints, his name included in the Mormon registry rolls, which were locked away behind the fourteen-ton doors of the Granite Mountain Records Vault, which was built into the Wasatch Range twenty miles outside of Salt Lake City. Henry Wagner, a paradigm of Catholic virtue (at least when he arrived in America), might find himself in an alien congregation, far away from the shadow of the IC Church.

  I guess if I’d have asked the more religious elements in my family—both alive and dead—they might caution that the weight of my decision could be considered fairly enormous. But I found such (theoretical) protest mostly absurd. (Wasn’t the circumscription of any religion potentially absurd? Unfortunately, none of us would find out until it was much too late.) I decided that U Myint Kaung would have been tickled. Maybe my sense of humor was inherited from him; the DNA test wouldn’t confirm that, but I hazarded an optimistic guess in the affirmative. Henry Wagner, possibly more than anyone, might understand the arbitrary nature of worship: Sometimes you were born into devoted faith; other times you had to find that devotion later on in life. And as far as my own religion, knowing that it was highly likely that Alex Wagner’s name would end up behind Mormon granite—well, I was just happy someone was claiming me for their own.

  Family Tree DNA was making the most intriguing promises to the public, and therefore had to be examined. And since 23andMe—at the time—wasn’t offering questionable information on Wicked Diseases, I would play no part in contributing to any unseen database, nor would I be faced with unwanted and possibly life-shattering genetic health results.

  So I decided to do all three tests: Family Tree DNA, 23andMe, and AncestryDNA. There was no harm in blanketing the field, in overnighting as much saliva and cheek-swabbed cellular DNA as possible to as many processing centers that would take it. I would risk Mormonizing my Catholic and Buddhist ancestors and would get in bed with what might just be a modern-day eugenics movement and find yet another way to open the Pandora’s box of my own blood. What could go wrong?

  *1 All of the information that follows about the genetic-ancestry industry is true as of the time of writing; the specific science and practices are, of course, in a state of constant flux.

  *2 23andMe, if you were wondering, is a reference to the twenty-three pairs of chromosomes that most humans are born with—and that carry the DNA within which the genetic code is written.

  *3 By October 2015, the company was once again allowed to offer customers reports on carrier genes, albeit for fewer diseases, and with less comprehensive information. Customers can opt to have their genetic and health information used for medical studies; according to The New York Times, pharmaceutical companies pay 23andMe to use this data in drug development. In May 2015, the company announced it would begin developing drug therapies itself. (It remains in the ancestry business.)

  *4 The church’s Family History Centers are open to the public.

  *5 You had to give it to the Church of Jesus Christ of Latter-day Saints, if only for the pluck!

  *6 After all, I could barely recall the names of all twelve disciples.

  I was certainly afflicted with the narcissism of self-testing, eager for data about me me me that would separate my indubitably unique DNA from that of the hoi polloi. Was it too harsh to presume that DNA-based ancestry testing was an exercise in self-involvement? Sure, some people (like my enlightened professor friend Maya) were taking the test to see how interconnected we were as a species, scientific affirmation of the hidden bonds that linked us to one another. And yet in less charitable hours, I contemplated that the makers of these tests were capitalizing on an illness that was increasingly symptomatic of this modern age—something that was precisely the opposite of Maya’s lofty quest: the quest to turn inward rather than outward; to look for differences between us rather than similarities. To find, ultimately and irrefutably, the thing that separated you from the rest of humanity, as if you could somehow exempt yourself from its degradations and humiliations. This had long been an existential quest; now we simply had technology to abet our search.

  All of the tests I purchased cost between one hundred and three hundred dollars per kit. If you limited your testing to one person and one test, you might be able to call it a deal: a cool Benjamin to find out you were secretly Italian? You couldn’t afford not to! But once you were hooked on the addictive practice of ancestry testing, chances were that you’d probably want to get your mother and father involved—just, you know, to get a little more information. And if that information was weird or juicy or in some way controversial, you’d probably buy a few more tests for your uncle in Chiang Mai, Thailand, or your cousin in La Crosse, Wisconsin.

  One hundred dollars became five hundred dollars; three hundred dollars became fifteen hundred dollars. People were giving the DNA kits out as Christmas presents, birthday presents, anniversary gifts. It seemed odd (to me, at least) that Santa Claus would leave the truth about one’s ancestral heritage under the Christmas tree, or that an unwitting husband might prove his wife’s false paternity as a ten-year anniversary gift, but the more I talked to friends and family about what I was doing, the keener their interest. It was like having a fairly accurate Ouija board: Everyone wanted to play. By the end of this project, I’d easily spent well over two thousand dollars on an array of DNA-based ancestry kits, most for this project, some handed out as gifts. This was a lucrative game, all the more impressive since most consumers were usually entirely in the dark about the actual technology they were purchasing. Mostly they took the test and waited, hoping for news that would scientifically affirm—or transform—who they were and where they came from.

  Each service’s full-color website garlands the kits with amazing science talk, and a heady rush attends the arrival of these futuristic-seeming gizmos. Some of the kits rely on spit samples for the needed genetic material, saliva that’s collected using a small vial with a spit guard. This is awkward. Other tests use the DNA from a cheek swab, which is administered via a small, doll-sized toothbrush. Both devices are unlike anything you might ever normally come across, and because of this, everything feels very Gattaca.

  I started out by testing myself. After all, my DNA wo
uld have genetic information about both Henry Wagner and U Myint Kaung, whereas my parents’ would show only discreet European or Asian bloodlines (or so I imagined). Still, it would be necessary to test them, too: to obtain the fullest picture of our family lineage, you wanted the biggest data set. The more people tested, the better the picture. And the older they are, the farther back the genetic information.

  Over the course of two afternoons, I swabbed my cheeks with the Thumbelina-sized toothbrush for the good men and women at Family Tree DNA. This was not as easy as it would seem, mostly because you must wait one hour after you eat or drink anything, and I am apparently a very thirsty and hungry person who consumes something liquid or solid approximately every forty-seven minutes. In the end, I had to set a timer to remind myself not to put food or drink in my mouth.

  Once that was complete, I dropped the swabbed toothbrush head into a small vial of preserving liquid, registered my kit online, and packed the sample away in a padded envelope destined for the Lone Star State, where it would be analyzed in what I could only imagine was a gleaming lab populated by white-coated genius geneticists.

  A few words about enlisting my parents in the project: It had been some time since I asked them for anything substantive, and certainly anything vaguely complicated or complicating. Even as a child, I’d never asked for much, and as far as I can recall, they weren’t particularly hands-on as it concerned my upbringing. (Note: This isn’t just a retrospective, therapy-induced accusation.) My mother bragged that she had never had to wake me up for class or bother me about schoolwork (although this became a source of mild shame when she found herself in a circle of kvetching peers), and my father was often gone for work, a phantom who came home late and yelled on the phone about polling data in southwestern Ohio. They roused themselves briefly to object to my choice of college, but then lapsed back into whatever the opposite of helicopter parenting is.