This zine was created for my Surveillance Design class at Parsons. We explored surveillance and privacy topics in a historical and contemporary socio-technical context. The topic I decided to concentrate on for this project was direct to consumer genetic testings (DTCGT). Today direct to consumer genetic testing services are becoming popular. As a consumer you might think that obtaining information about your DNA online is faster and cheaper than going to a doctor. However, if you knew the risks of doing such a delicate transaction online, you would think twice before ordering a DNA kit at home.
Content of Zine:
About Genetic Tests
Genetic testing is commonly performed by a doctor, nurse practi- cioner or a DNA specialist. Doing a genetic test is a delicate pro- cess and psychological support is offered before, during and after the results have been given.
Nowadays, genetic testings can be ordered online like any other commericial transaction. These tests are governed by contracts, terms of service and privacy policies which are not always industry specific.
1. Direct to consumer genetic testing (DTCGT) companies claim that your personal information will be stored safely and will remain private. However, a person’s genetic data can serve as a unique identi er for that individual. Meaning that even if your name is not associated with your genetic code it can only belong to you making it permanently linkable to you.
2. Your blood relatives and especially your siblings, share part of your genetic code. When you send a sample of your saliva to be examined you are putting them at risk too. Make sure you obtain their consent rst, maybe they will even talk you out of it.
3. When you order a genetic test online you have to click “I agree” to legally binding contracts that you probably don’t even read. Even if you do read them, these contracts can easily be changed with- out informing you because many companies will deem consent to altered terms through a visit to their website.
4. There is a chance that DTCGT companies can share or sell your DNA, since they are able to change their contracts freely. This allows for third parties to access your DNA and use it for their best interest. The risks you might encounter if this occurs include: targeted marketing and discrimination in employment, insurance or loans.
5. Additionally, your DNA could be stolen by hackers and once it has been breached, it can’t be changed or re-set. Your DNA is much more important than a password or a bank account information because it can’t be changed. Once someone has access to your most personal data they can use it for a number of things includ- ing identity theft.
DTCGT should not be taken as lightly as any other online transac- tion. If you want to take a genetic test consult your general practi- tioner.
Andelka Phillips, ‘Only a Click Away – DTC Genetics for Ancestry, Health, Love...and More?’, Applied & Translational Genomics (forthcoming 2016).
Andelka Phillips & Jan Charbonneau, ‘From the lab to the market’, Gene Watch 28(3), 2015.
Andelka Phillips, ‘Direct-to-consumer genetic tests – more than just a question of health’, BioNews, December 2015.
Andelka Phillips, ‘Genomic Privacy and Direct-to-Consumer Genetics – Big Consumer Ge- netic Data – What’s in that Contract?’, GenoPri’15 - The 2nd Workshop on Genome Privacy and Security, www.genopri.org/program.html.
Andelka Phillips, ‘Think Before You Click – Ordering a Genetic Test Online’, The SciTech Lawyer 11(2), Winter 2015.
Dianne Nicol & Meredith Hager, ‘Direct-to-consumer genetic testing – a regulatory nightmare?’, Medical Journal of Australia May 2013.
The zine was made in Adobe InDesign.
Typeface used: DIN Pro