A direct-to-consumer genetic testing service called 23andMe came under fire recently because of a DNA profiling app. While there are many ways to discriminate using genetic information, that’s not the only dark side to genetic data. Here are three ways genetic data can be abused and steps society, industry, and regulators can take to ensure genetic data is open for good use and closed to abuse.
The line between good and evil
First, in order to better understand why users don’t understand the dangers in releasing their genetic information to services such as 23andMe, and why regulators are stumped over how to protect consumers from genetic data abuse, consider what went afoul with the 23andMe app. Or rather an app a third-party developer made that uses 23andMe’s genetic data and connects to it via the company’s application program interface (API).
It’s called the Genetic Access Control app and it enables website managers and others to identify website visitors by ethnicity, gender and other parameters. App users could then limit or block “undesirables” from accessing online content. It’s not a huge leap to imagine that this and similar apps could also be used one day to weed undesirables from job applicants, real estate rentals or purchases, and other life sustaining needs.
The predictable backlash to this app was immediate and severe. The public verdict was that this app was undeniably used for evil. 23andMe promptly blocked the app. Evil, it appeared, was swiftly conquered.
But the issue of using genetics to identify users is not that simply labeled or dismissed.
This very same app could be used for good purposes as well. On Github, a Git code repository hosting service, the app developer provides examples of good uses:
1) Creating "safe spaces" online where frequently attacked and trolled victim groups can congregate, such as a female-only community
2) Ethnoreligious sects may wish to limit membership, e.g. Hasidic Jewish groups restricting access to Ashkenazi or Sephardic maternal haplogroups with the "Cohen" gene
3) Safer online dating sites that only partner people with a low likelihood of offspring with two recessive genes for congenital diseases
4) Pharmaceutical applications that check for genetic predisposition to negative drug interactions before dispensing
5) Groups defined by ethnic background, e.g. Black Panthers or NAACP members
In the near future, DNA and genetic profiling will be widely used as an identity authenticator. It will be used to verify the identity of hospital patients, especially those who are unable to speak for themselves. It will also likely to be used to verify the identity of bank customers; consumers who use mobile, wearable or online secure payment systems; voters; employees; convicts and their victims; natural and manmade catastrophe victims; and, patients seeking to access their medical information, among other uses.
DNA used as an identifier works for both good and ill; so do the apps that make the genetic identification process possible. It is therefore extremely difficult for regulators and lawmakers to find a definitive line between the good and evil that inherently exists in using genetic information for identification purposes.