Human beings have an insatiable desire to know our heritage. In the past, the best tools to determine our genetic heritage came through family Bibles, scribbled family trees, and stories handed down from generation to generation. Serious genealogists could do a better job, but it was still largely an inexact science. And if there were gaps in our family histories, it was nearly impossible to fill them in.
In the Moak family, a distant cousin published an extensive genealogy nearly 60 years ago, helping spark my interest in the topic.
But with the discovery of the structure of DNA in the 1950s, and the later mapping of the human genome, family genealogists suddenly had new tools available. Now, using a small swab of saliva or cheek scraping, you could find out (broadly, in most cases) where your ancestors came from. Entrepreneurs seized on the technology, and we started hearing about services which could give you a picture of your genetic heritage. Now, ads for services such as AncestryDNA, 23andMe, MyHeritage and others have garnered millions of dollars from consumers eager to fill in the gaps in their family histories.
Typically, consumers pay from $99 to $200, and get a report showing groups and regions from which their ancestors probably originated. A typical report will give you a percentage of the DNA associated with known ethic groups, along with a map showing where those people probably lived. Earlier this month, PC Magazine reviewed five test companies (23andMe, AncestryDNA, National Geographic Genographic Project, HomeDNA and MyHeritage DNA). Their comprehensive report gives a good snapshot of the different services provided. Some have been offering extended services; for example, showing your relative risk for diseases with known genetic markers.
DNA testing has, of course, yielded many promising possibilities in addition to the commercial ones. Some genetic diseases can now be spotted and possibly even prevented. But with all the promise has also come many fears. Some have raised the specter, for example, that insurance companies and drug companies would be interested in information that a person carries genes for deadly (and expensive) diseases. Others have voiced darker fears, for example, that babies with “desirable” traits could be chosen in favor of others with less-desirable genetic potential, possibly leading to a sort of genetic apartheid.
A more present concern, though, is privacy. In a recent blog post, Federal Trade Commission attorney Lesley Fair advised consumers to be wary about how well this potentially valuable information is being protected. “The data can be very enlightening personally,” Fair noted, but a major concern for consumers should be who else could have access to information about your heritage and your health. If you’re thinking about buying an at-home DNA test kit, you owe it to yourself — and to family members who could be affected — to investigate the options thoroughly.”
Fair urges consumers to comparison-shop services to see how they intend to protect your information. “Scrutinize each company’s website for details about what they do with your personal data,” she urges. “Rather than just clicking ‘I accept,’ take the time to understand how your health, genetic, and other sensitive information will be used and shared. Hold off on buying a kit until you have a clear picture of the company’s practices.”
And in this era of ever-bigger breaches of computer systems with sensitive data (this summer’s blockbuster Equifax breach is just the latest), it’s important to recognize the risks. These companies don’t just collect your DNA; they also collect payment and demographic information about you that could potentially be valuable to thieves.
So, shop carefully, monitor your credit, and be ready to report problems. Fair urges consumers who have experienced problems or concerns about genetic testing companies to report them to the FTC; she noted the agency has already acted against companies they accused of failing to protect their customers’ privacy. To file a complaint, visit https://www.ftccomplaintassistant.gov/#crnt.