Have you ever done one of those nifty home test kits to check your ancestry? In this new world where covid is a long-term reality and the resulting boom in telehealth services, genetic home test kits are seeing a comeback in popularity. What many consumers aren’t aware of, is what happens to their data after they get their report back. Genomelink is presenting a dashboard product to unlock further insights using your genetic data.
That sounds cool… until you start thinking about privacy.
Most of the major companies in the business don’t even give you the option to not have your data sold, but that fact is buried so far into the fine print, it is no wonder that people miss it. Research published in the journal Nature found that genetic-testing companies frequently fail to meet even basic international transparency standards. Unifying all this data into one dashboard product unlocks even more opportunities for your data to be compromised.
There are four big glaring red flags prospective users should be aware of:
1. Cyber security standards in the genetic testing industry are low-tier.
2. The protocols for how to make your information “anonymous” before they sell it en masse are laughably ineffective.
3. There are no restrictions on who can purchase it or for what purpose.
4. Genomelink is trying to build a platform to streamline access to this data for “all users everywhere.”
Genomelink Co-founder Tomohiro Takano provided the following quote on ProductHunt.com: “We believe in the future, billions of people will have access to their DNA data. When that happens, imagine: [the place] where you will store DNA data and how you [will] connect data [to an] app ecosystem. That will be Genomelink in a nutshell.”
As someone who lives with disabilities, the last people I want to have access to my DNA data are health or life insurance providers or other for-profit interests who may not have my best interests in mind. Genomelink’s vision sounds like the well-intentioned beginning of something with the potential to be abused in sinister ways.
Rev. Delilah Redfield (she/her) is a queer, neurodivergent nerd with disabilities who spends her time writing, reading, voice acting, and making art when she isn't at her day job saving the environment. She is a career scientist, ordained minister, and cat mom.
