Sam Schramski

Direct to Somewhere

Rogożno is not your typical stopping point on a European rail system. Especially in the twilight period of December, when the festiveness of Christmas is nigh but melancholy begins to sink in alignment with the setting sun. It is, like numerous nondescript train stations in Eastern Europe, in the middle of a railyard-cum-industrial quarter-cum-city park. Passengers are only likely to stay long enough to look up from Sudoku or texting, unless of course they must disembark.

But disembark I do, the dankness and typical pallor of Poland in the winter unabated. Indeed, my fondness would grow disproportionate to any gratifying results. My connection to a not-so-distant ancestry would remain as tenuous as the sun’s rays. The same ambivalence is in store for anyone who spits in a vial and squirrels it away in a FedEx envelope.

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When the entire human genome was revealed in 2001 (completely, two years later), it was declared one of the singular achievements in the history of science. Some members of the scientific community adjured that it was as significant as the achievements of Watson and Crick, the discoverers of DNA, or at least more important than putting a man on the moon. Headlines flooded the pages and grainy web pages, such as The Daily Telegraph, which breathlessly reported, “All human life is here: This picture marks a milestone in man’s knowledge of himself . . . for good or evil.”

But superlatives only started to wrap their double strands around the public once new technologies surfaced, managing to translate, simplify, and economize formerly expensive and bulky exams designed for individuals with rare diseases (or who somehow possessed seven-figure salaries and trust funds to spend down). The explosion in personal genomic testing, often known as DTC (direct-to-consumer), has not only charted the rise of accessible genetic science but has evolved into the most “data-driven” means of measuring one’s ancestry. In the far-flung cyclotrons of the world, there are even exams specialized for paternity, diet, and improving athletic performance. In a curious and perhaps insidious example, there are even infidelity exams, which have a wide following and sport names like “She Cheated” and “All About Truth.” Even marginal civil libertarians are wary of these options.

Like any classic tech parable, the boundless enthusiasm early promoters in medicine and genealogy felt about DTC has turned dystopian. This is clearest in the health and medical fields. The same sentiments that led those working on the Human Genome Project to declare their work an unparalleled accomplishment now find themselves plagued by partially informed consumers (or patients) often hell-bent on proving a personal agenda, informed only by a sample—of a variant—in a patient’s genome. Furthermore, not only are all the current methods utilized by top DTC services sample-based, but the outputted raw data is as well. They represent a minute fragment of genetic material. While Alexander Pope taught us that a “little learning is a dangerous thing,” he never fathomed a situation where physicians, anthropologists, and lawyers—not to mention the hoi polloi—would be at each other’s collective throats over alleles.

As Andelka Phillips, a scholar who studies the legal and ethical implications of DTC, explains: even many of the more reputable firms consumers use—23andme for medical testing, Ancestry.com for lineage, as examples of the top two businesses in their respective fields—have terms of use that are inequitable, to speak the least of it.

 “The privacy law surrounding DTC is paltry compared to what exists for consumers even in other technologies. Regulation has not come up to speed as it has with other technologies. So, there’s a distinct opportunity for these data to be used or sold without the consumer ever really being aware of it.”

Buyers could, and may well now, include insurance companies or government agencies—entities who, while not prima facie willing to use genetic results for nefarious aims, might be more than willing if given an opportunity. There is already a cottage industry of cases in which individuals have submitted genetic data, only to then be haunted by their imprudence.

 “Depending on the goodwill of companies gathering personal data has not turned out well for those allowing their genetic information to be harvested,” Phillips notes, “and there’s no real reason to indicate this will be significantly different now even with DTC being more sophisticated.”

This premise stands for the most reputable firms. For those services, both the actual scientific precision of the results, as well as the fate of one’s digital DNA, is unknown at best. With these equivocal services, it’s possible to sign away your personal information in a way in which neither the Federal Trade Commission nor the Federal Drug Administration can provide recourse or any official grievance at all. There simply isn’t a regulation on the books that applies in the USA, nor, arguably, even in much more consumer-protective regimes like those in the European Union, which have made strides in online and social media privacy law that forced Big Tech to institute policy changes.

Personal information and privacy concerns may seem like a tired concern of digital activists and civil liberty advocates, but infringements on these very personal matters may in fact rank secondary to the science behind DTC testing. Consumers seem to be broken down by those who are interested in their ancestry, congenital health risks, or some admixture of both. Others—including those to determine a perfect ancestral diet or the aforementioned paternity kits—form a small portion of market share, perhaps less than 10%. Even with the most reputable tests, the sampling necessary to bring the genetic results of your Sicilian ancestry at a price equivalent to a pasta dinner are not insignificant.

 “The problem with DTC testing is not that people are doing it,” says Stephany Tandy-Connor, a genetics counselor at Ambry, “it’s that they come to believe the results to be 100% accurate. What folks need to understand when they look at these results is that they are an incomplete picture. They’re not a puzzle with all the pieces filled in by any means.”

Tandy-Connor has been on the frontlines of this debate with those seeking to better understand their risk factors for disease. In a clinical setting, a geneticist, for no small price, may offer a patient a full and complete sequencing of a patient’s genome or exome to root (or less-than-desirable) traits. Even if they were to somehow choose instead to only run a confirmatory exam on the output of a previous DTC test, that too would require the operation of a more advanced genome sequencer.

Barring these options, DTC results come from microarrays or outputs from biochips. Both are scans over vast arrays of minute genetic material, which produce little “chips” or fragmented samples for consumers to efficiently acquire and transit. But by their very efficiency, including the cost variety, they pale in comparison to what one wields with the raw data from a full sequence.

 “These tests are fun, no doubt about it,” assures Tandy-Connor, “but a lot of the data are incomplete. Some people call it dirty. Even the raw [uninterpreted DTC] outputs aren’t nearly as complete as you’d get in a clinical lab setting—that’s why they’re ‘unclean.’”

Indeed, the cost of a full genome sequence ranges from $700-5,000, depending on the level of precision and insurance coverage. A similarly complete exome exam, which measures the genome’s minuscule proteins and peptides—its exons—comes in at between $400-15,000. A confirmatory test, solicited after rushing over to your nearest physician in a disease-induced pique, costs roughly the same; the operation of the equipment and materials would be only marginally different. For the satisfaction engendered after ruling out a propensity for a specific breast cancer or Alzheimer’s, this undertaking may be worth the trouble.

The question remains, though: Why would you start with a DTC kit to begin with if you’re not troubled by the cost of a full sequencing?

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In Rogożno, my first serious interaction with a local in broken Polish and then a more broken German-English pidgin, was with the proprietor of our motel. He was an older gentleman, a little surprised to see my wife and I stumble into his lobby with backpacks and the appearance of adventurous spring breakers. When I asked him if he knew any Schramskis (or Śramskis or Szramskis…), or perhaps somebody who might, he grew ashen.

 “The only person who knows would be the priest. The Church has all the historical records.”

The next two days saw us trudging along muddy roads, hopelessly scanning gravestones and speaking with the local priest. I had copies of baptisms and marriage records in my possession dating back to the early 18th century, both for Rogożno and the hamlet adjacent, Gościejewo, where my great-great-grandfather was born. The father was amiable, although terribly busy with a coterie of shawled babcie in his foyer, many of whom likely had more pressing concerns than those of a genealogical hobbyist. Regardless, when we did speak, he suggested I check into the regional curia’s archives.

 “We don’t keep anything before 1970,” the priest informed me. As fond as the Roman Catholic Church is of tradition and ritual, it’s perhaps fonder still of centralizing documents and policy.

Even though European history was never my strength, I was reasonably sure that 1970 did not coincide with the reign of the Prussian Empire. Even in rustic Greater Poland, the best sleuthing was already performed by a distant cousin in Michigan. She had already obtained the documents the Church kept in storage hundreds of miles away, having beaten the cleric to the communion cup by months.

The use of DNA for determining ancestry is not new. Anthropological genetics is a field that came of age in the 1970s at a time when physical anthropology (including forensics) and genetics intertwined for the first time. After the human genome had been sequenced, calls from both the medical community and the public—not to mention clever entrepreneurs—to use it to unwrap everyone’s ancestral migrations appeared within days. But the basis for determining ancestry via one’s genetic makeup, whether via mDNA, Y chromosome, or single nucleotide polymorphisms (SNPs), is wrapped up in a series of often-subjective decisions about race and ethnicity. Ancestry.com and MyHeritage, which are more commonly referred to as “genetic genealogy” rather than anthropological these days, are premised on data held within their own corporate coffers. Such repositories, while ample, are contingent upon matching incoming samples to preexisting data built upon over the last decade.

Initiatives such as the National Geographic and National HapMap Projects have helped connect modern samples in a way that might better provide an understanding of historical human migration not tied to direct consumer demand, but they are also limited in their reach. While information on the exact growth of databases of genetic information held by DTC companies is not publicly available, keep in mind that 330,000 people utilized these services by the end of 2012. More than 8 million people purchased these kits in 2019 alone. That is a staggering number of our chromosomes in storage.

When I first received an email from an outmost relative in the steppes of the Midwest, a landscape that would have been uncannily familiar to a 19th-century Pole, I could only assume it was from a shirt-tail cousin who wished to chat about a shared great-great-grandfather. Or perhaps it was an adoptee hoping to gain better insight into their current existential crisis: could I provide more information about a wayward father or uncontacted mother? Cindy was neither; just a very eager and persistent genealogist who contacted me with documents out of the blue. Our shared great-great-grandfather was kindle for my eventual exploration, one which saw me traipsing around the cobblestones of a (restored) 13th-century Catholic church in pursuit of an 18th-century patriarch whose name at the very least sounded royal (“Valentyn”) to untrained ears.

The joy of being able to affirm a speculative claim to an imagined ethnic identity is exhilarating. Especially when, not unlike Elizabeth Warren, my family lore about apocryphal Native American ancestry refused to fully materialize from my saliva.

 “But that’s not the experience everyone has,” argues Wendy Roth, Professor of Sociology at the University of British Columbia.

She recently co-authored a research paper based on 100 qualitative interviews of DTC ancestry recipients in which she demonstrated that the often-fluid notions of race and ethnicity provide multiple valences for people to perceive their backgrounds. These identities fit into a theory of “genetic options,” which, like many currencies, may be more available to some than others.

 “You may have had a good experience interpreting your results. And that’s great—many people feel this from these [DTC] tests—but they can confirm biases that people already have, partially feed into others, or be completely disbelieved by the person taking them. People choose selectively how they want to be represented.”

Given the high rate of imprecision in DTC testing to date, the consequences may be twofold: the information transmitted to the recipient and the interpretation of the recipient may be incongruent. But it’s not always as simple as you might think, say, with white respondents hiding their black ancestry out of concerns over social desirability, or non-white populations explicitly desirous of a single, homogenized racial identity. In fact, interviewees of diverse backgrounds accepted or discarded identities based on their specific contexts. A Latino respondent had a test returned with Celtic ancestry, which he was less favorable toward, but there were other Latino or black respondents who were comfortable with their European influences.

Part of the dilemma for white respondents, Roth notes, is that they may seek a “costless” whiteness after viewing their results.

 “A White respondent may seek to optimize their distinctiveness, their exoticness, to be less boring. But doing so comes from a place of privilege where now, at this moment, that is possible—as is being free of stigma and prejudice, which would have defined a non-white person who wasn’t so able to choose freely.”

One method in doing this for whites, of course, is to focus on ethnicity. After all, many black and Latino folks will never be able to identify with exact precision from where their ancestors hailed, using DTC or the resources of historians like Henry Louis Gates and the producers on his Finding Your Roots series. Chattel slavery of Africans, and slavery and political-economic control close to it over indigenous people, not to mention the dearth of written records from either of these populations, ensures this.

Yulia Egorova, an anthropology professor at Durham University, touched on this in a recent commentary about the empowering wonders of DTC ancestry, albeit in a non-American example:

“[T]he very agenda of constructing national or community‐specific genomes has been exposed as highly problematic, as the genetic uniqueness of any population proved to be impossible to delimit. For instance, scientists involved in the Mexican genome diversity project themselves asserted that the so‐called ‘Mexican genome’ could not be either defined or separated from other populations of the world.”

This is notable given that the results are from the Human Genome Diversity Project, whose analyses are more systematic than a typical DTC test. That and the Mexican nation-state affirms its distinctive mestizo or “mixed” racial history at every turn. Or perhaps the population is so decidedly intermixed and that is the point.

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My last few remaining hours in the village of Gościejewo and nearby town of Rogożno were spent seeking out gravestones with some approximation of my last name etched into the tombstone, punctuated by browsing the regional museum with a guide whose English was confident but still unintelligible. In the latter, I encountered references to country cousins who found themselves in the swirl of the 20th century’s most important historical events all in one lifetime: World War I, Poland’s first independence, World War II, Soviet occupation, Poland’s second independence. Two of these long-lost uncles, neither Jewish but still threatening to the Third Reich, met their demise in concentration camps for “political insubordination,” as it was artfully described.

It seems telling that genetics provided me the avenue to this smart little historical center on the plains of Eastern Europe. I took far more interest in it compared to the other features of my disremembered spit kit: the disease risk we shared in common, the degree to which some of my ancestors were from Northern and Western Europe rather than Eastern, even their lack of statistical precision.

Those concerns were trivial. Just like any claims I have to being a line-bred Pole.

Sam Schramski is a writer, journalist, and researcher who lives in Silver City, NM. He has written extensively about the absurd in the Amazon, the surreal in South Africa, and ugliness in the USA. He is currently working on a haunted house devoted to scaring people into accepting climate change as fact.

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