ARE YOU WHO YOU THINK YOU ARE?
The rise in DNA testing is reshaping the ways we think about our families
Christmas is the biggest time of year for genealogical testing companies. That is when DNA test kits enjoy their biggest sales. What else to give the person who has everything? For many it is just that, a novel present that might inspire a new hobby or interest. But for others, it may represent a Pandora’s box that once opened reveals the answers to mysteries that would have otherwise remained buried to history. Once learned, some things cannot be unlearned. And the consequences can be unexpected and even devastating.
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 seatbelt, because this is not your greyhaired 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 begins 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. Genealogy can be obsessive, an addiction for which there is always more to find. If you are concerned about keeping your genealogical privacy, that ship has largely sailed.
Like any good reporter, Copeland casts her net wide when looking for sources to interview. She talks 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 after rape or incest, 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 visiting one another.
But it isn’t just finding relatives. Companies like 23andMe specialize in identifying genes like BRCA1 and BRCA2, linked to breast and ovarian cancers, and genetic variants for diseases like cystic fibrosis and Parkinson’s.
They are partnering with such research institutions as 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?
The Washington Post