Our Obsession With Genes, and the Risk Behind it.
A recent rise in the popular fascination with ancestry has led to a boom in business specializing in genetic testing, such as 23andme and Ancestry.com. And this boom looks far from over – according to Business Wire, “the global genetic testing market is projected to grow at a CAGR of 11.76% to grow from US$4.620 billion in 2017 to US$5.783 billion in 2022.” And as Business Wire further illuminates, there are several factors to this rapid growth; for one, “rising incidences of genetic and hereditary diseases,” as well as “growing awareness, technological advancements and [a] rise in the application of genetic testing for early detection of various diseases” have enabled the growth. With the relatively low cost, more people than ever have the opportunity to learn more about their genetic background, and quickly.
But, of course, nothing is perfect. The market’s growth has seen users finding out all manner of interesting things about the circumstances of their birth — possibly ones they didn’t want to know about. And, to add another edge to the sword, this new technology does little to protect the identity of sperm donors who donated under a condition of anonymity. In fact, a number of donor-conceived children or their guardians have sought such DNA testing to reveal the identities of their donors for various reasons; while sperm banks firmly protect the identities of anonymous donors, within their biological children sits a genetic answer to the question of ancestry, as Slate reports, “just like a condensed computer file.” Indeed, “in an age of sophisticated genetic testing, the concept of anonymity is rapidly fading.”
And this is not the worst of the genetic testing industry; as former FDA commissioner and president of the Center for Medicine in the Public Interest Peter Pitts writes, the sensitive information imparted by these genetic tests to companies like 23andme.com does not “simply sit[…] in a secure database, protected from hacks and misuse.” Rather, “genetic-testing companies cannot guarantee privacy. And many are actively selling user data to outside parties.” And even those companies who “generally don’t sell patient information, such as Ambry and Invitae, give it away to public databases… [where] Hacks are inevitable.”
Nonetheless, genetic testing promises “a revolution in healthcare,” where easily accessible “diagnostics can provide an unprecedented look into a person’s family history and potential health risks.” However, it remains clear that there are serious ethical issues involved in the industry which require immediate legal and legislative attention.
