It is estimated that the global sales of genetic tests will reach $60 billion per year by 2020, so we are definitely entering the era of personal genetics as a big business. This may sound great for companies like Ancestry and 23andMe, yet it also opens up an important ethical debate…
As you may very well know, family history is often the first thing doctors ask for to assess health risks; yet, remembering such details can be a real challenge, as our own memory may very well fail us and the knowledge of our ancestors health history is often quite limited.
There's no doubt that combining DNA information with relevant genealogical data can bring huge health benefits for individuals—sickness can be prevented, lives can be saved, and that’s exactly what companies such as AncestryHealth and 23andMe claim they can help us out.
AncestryHealth to sell anonymized health information
AncestryHealth combines the family tree data and the genetic data from to create a full picture of family health history. Ancestry entered the field of consumer DNA analysis in 2012 with the launch of AncestryDNA, a $99 spit test that will analyze your DNA for details about your ethnic makeup and connect you with distant relatives.
Ancestry is hoping to sell that data for medical research purposes. According to Ken Chahine, executive VP and general manager of AncestryDNA and AncestryHealth, “We’re definitely in conversations with multiple groups to assess the value and interest of the information for medical research.” The data sold to medical researchers will be “anonymized, aggregated, and de-identified,” he says, so that “even if one database were breached, you wouldn’t end up with any information.”
In 2007, 23andMe launched web-based service empowering individuals to access and understand their own genetic information. At that time, by simply sending a saliva kit to the company, individuals received detailed information regarding their ancestry and related to their health, inherited features, and even unknown talents exposed in their genotype. According to Esther Dyson, a director of 23andMe and an investor, “(…) 23andMe will help people to better understand the interacting roles of inheritance, environment and behavior. By bringing individuals together, we will have the power to unveil what our genetic framework means for us, and how we can use that information to improve our lives.”
In November 2013, The Food and Drug Administration (FDA) closed down 23andMe’s Personal Genome Service, for being intended for use in the diagnosis of disease or other conditions or in the cure, mitigation, treatment, or prevention of disease, or intended to affect the structure or function of the body. FDA’s decision came as a result of many patients taking drastic decisions—going as far as having life-changing operations, based on 23andMe’s results.
On the other hand, 23andMe constantly conducts health studies along with Pfizer, Genentech or other companies regarding diseases such as Parkinson, Lupus, Rosacea etc. In February this year, 23andMe was granted authorization by FDA to market first direct-to-consumer genetic test under regulatory pathway for Novel Devices.
On June 18, 2015, 23andMeInc. announced it has genotyped more than one million people worldwide.
Genetic Access Control
A programmer came up with a way to block users from websites based on their DNA. Although 23andMe shut down the developer’s access to its API last week, only two days after the code was published, the incident shows that personal DNA can be used in unwelcome ways.
The anonymous programmer posted on GitHub an early-stage program called Genetic Access Control. Functioning as a log-in mechanism, this third-party program was designed to hook up to the company’s API and mine the 23andMe accounts of users who agreed to share their information, just like the way you agree to let apps connect to your Facebook or Twitter profiles. Consequently, websites using Genetic Access Control could scan that data for information about “sex, ancestry, disease susceptibility, and arbitrary characteristics” — and then restrict users’ access to the site based on this information.
Genetics makes the headlines
It maybe entertaining to read news about how Elle Fanning (Sleeping Beauty in Disney's Maleficent) is related to Kate Middleton, or George Clooney is a distant cousin of the guy he plays in The Monuments Men, yet let's not forget...
Various studies showed evidence that it is possible to re-identify individuals using different parameters. Yourgeneome.org talks not only about the unquestionable benefits a national DNA database has in the fight against crime, but also the risks it may raise in the future.
Opening Pandora’s box
It seems to me such health initiatives although having the best intentions at heart may open up a Pandora’s box, which we later might not be able to close it down (if necessary).