THE WASHINGTON POST – December is the busiest time of the year for genealogical testing companies. That is when home DNA kits have their biggest sales, cleverly marketed as the perfect gift for the person who has everything. For many it is just that, a novel present that may inspire a new hobby. But for some it is Pandora’s box, whose secrets once revealed cannot be unlearnt.
Libby Copeland’s The Lost Family: How DNA Testing Is Upending Who We Are serves as an entertaining and impressively comprehensive field guide to the rapidly evolving world of genetic testing. Strap on your seat belt, because this is not your grey-haired father’s harmless hobby. At times it reads like an Agatha Christie mystery with twists and red herrings. But it is also a philosophy book and an ethics treatise, with a touch of true crime. It wrestles with some of the biggest questions in life: Who are we? What is family? Are we nature, nurture or both?
Copeland began with a tenacious retiree named Alice looking for the truth about her orphaned father’s family. Using her story, Copeland walks the reader through how genetic testing works, with just enough detail to leave you confident in the results (seriously, this is how schools ought to teach biology). But even if 20 pages later you’ve forgotten the difference between autosomal and mitochondrial testing, you will be able to follow along without any trouble. The gist of it is, while some genetic claims are tricky (ancestral heritage is constantly being redefined), others like relative matches are remarkably accurate.
Genealogy can be obsessive, an addiction for which there is always more to find. The first human genome that was sequenced took 13 years and USD2.7 billion. Today, you can sequence your genes for less than USD1,000 (the price is still going down) and discover new cousins every time you log in. Volunteer citizen-scientists known as ‘search angels’ act as mentors and guides for those just starting out on their genetic journey. There is a vibrant subculture with its own lingo, special apps, celebrity genealogists and even YouTube videos of ‘ethnicity reveals’.
If you are concerned about keeping your genealogical privacy, that ship has largely sailed. A few decades ago, finding that needle of a relative in a haystack was unlikely. But as more people post their DNA online, genetic genealogists can go backward in history to find a common ancestor and then, with public records and detective work, discover a relative in the present day. That’s how they caught the Golden State Killer.
Like any good reporter, Copeland cast her net wide when looking for sources to interview. She talked to people whose casual test revealed an NPE or “Non Paternity Event” (your dad is not your dad!). One company, AncestryDNA, even has a highly trained customer service team of empathetic listeners to help people dealing with unexpected results.
Copeland seeks out adoptees searching for their biological parents, and the offspring of sperm donors who discover they have dozens of siblings. She looks backward at the ominous history of eugenics, which was harnessed by the Nazis and by racist authors today. She examines the efforts to help African Americans trace their heritage, since they don’t show up on census records before 1870. She even reports on people who post on the white-supremacist website Stormfront who discover they are not as white as they thought.
What’s more important: confidentiality or transparency? Much of the way you look at this debate comes down to whether you are the seeker (the one who initiates the research) or someone who is minding their own business when, out of the blue, a completely unknown relative is knocking on the door. For some women, who may have given up a child for adoption, the revelation is particularly excruciating, bringing up long-suppressed feelings. Some families simply ignore the evidence, deciding the version they are more comfortable with trumps science. For others, the more family, the better. They adjust and thrive with their new relations, finding shared hobbies and going on cruises.
Then there is the financial angle. After reading about the impressive profitability of genealogy companies and their growth potential, you may want to call your broker. As one early entrepreneur states, “This is a multibillion-dollar industry and nobody’s noticed it yet.” Certainly there are a lot of companies doing DNA testing, 246 in 2016 alone, with AncestryDNA dominating with the biggest database. It may remind you of the early days of the Internet, except in this instance, the customers are also the product.
But it isn’t just finding relatives. Companies like 23andMe specialise in identifying genes like BRCA1 and BRCA2, which are linked to breast and ovarian cancers, and genetic variants for diseases like cystic fibrosis and Parkinson’s.
They are partnering with research institutions like Stanford and the National Institutes of Health and pharmaceutical companies like Pfizer to do studies that are just beginning to bear fruit, with the promise that one day scientists can pinpoint with precision the genes that cause a disease. There is a case to be made that companies ought to be paying for you to spit in a tube, not the other way around.
How would we feel if our genetic information was used by companies to deny us health care? Do you even want to know if you carry genetic markers for Alzheimer’s? Is anyone reading the fine print for all these DNA testing companies? Copeland does (so that you don’t have to) and is still pretty mystified.
At times reading this book, you get the sense that we are on the edge of some brave new world. It’s exciting, and a little frightening too. Even if you think (like everyone does) that your family tree holds no uncomfortable surprises, Copeland will make you ponder just how much stock we put into our genetic heritage.