Think before you spit! – genetic data and commercial DNA tests

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Privacy Foundation NZ

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Think before you spit!

We would like to raise awareness about commercial DNA tests and their flaws. The industry has created a market for DNA tests as commercial services and allows people to order tests online. That industry has very little regulatory oversight.

The research project conducted by Dr Andelka Phillips and Professor Samuel Becher explored the industry’s DNA services and the risks they pose to consumers’ privacy. This project highlights a number of things about these services, which people should think about before purchasing a test. See the video below to learn more.

The market for these tests has increased in popularity in recent years and many people are now purchasing DNA tests for health and ancestry. Most companies allow customers to buy tests through their website. After the online purchase the company will send a test kit, which normally involves a test tube for taking a sample of spit, which the consumer then sends back to the company.

With the increase in medical data breaches in the last couple of years (for example, MediBank) the risks that DNA tests pose for privacy have increased. That is because both your sample of DNA and genetic data are sensitive in nature and has the potential to be used for a wide variety of purposes, some of which we might not be able to anticipate at present.

If you are thinking of purchasing a test, consider the following:

  1. You are giving away your unique genetic code.
    This is information that can always be linked back to you. As we also share a lot of DNA with our families, it is also genetic information about your family. The potential misuse of that information can impact you and your family.
  2. The value of the results of the test can be limited and doubtful.
    Most tests on the market are not standardized. You may receive contradictory results from different companies for the same factor (for example, estimations of your ancestry or risk of some disease, such as colon cancer). Also, most companies also only test portions of your genome. You may not be able to rely on these results for healthcare decisions and would need follow up tests in a clinic.
  3. The use of your genetic data may bring many future risks for you (and your family!). Those are:
    • Ability to get the insurance in the future
    • Potential future use of genetic data for company’s own goals (for example, health and ancestry research).
    • Potential for data breach, and such breaches have already happened.
    • Transfer of your data to third parties because of research partnerships with the pharmaceutical industry or acquisitions (for example, 23andMe has been acquired by Virgin).
    • Access to your genetic data by government agencies:

So, think before you spit (buy a DNA test)!

Have you read the company’s terms and conditions and privacy policy?

  • If you haven’t, are you comfortable accepting terms without reading them?
  • Who do you want to have access to your genetic data and DNA?
  • How would you feel if a company used your data for other purposes without telling you?
  • How would you feel if you have an ancestry test and your results reveal something unexpected or different from your sense of identity?
  • How would you feel if having a test impacted you or your family’s ability to get health insurance?
  • How would it impact you if your data was leaked in a data breach?
  • As the industry operates internationally, this means you may be sending a sample of your DNA overseas and, if something goes wrong, it may be difficult for you to take legal action against a large multinational company.

 

More information on:

 

This video is based on our research for the project Fairness and Transparency in Emerging Health Markets: Protecting New Zealanders from the Risks of Personal Genomics. It is intended to introduce you to the world of commercial DNA tests (aka direct-to-consumer genetic tests) and the risks that these services pose to consumers.

Please see SSRN Draft Paper http://ssrn.com/abstract=4180967

And for the full paper, see Samuel I. Becher and Andelka M Phillips, ‘Data Rights and Consumer Contracts: The Case of Personal Genomic Services’ in Damian Clifford, Jeannie Paterson & Kwan Ho Lau (eds), Data Rights and Private Law (Hart Publishing, forthcoming)

The research was funded by the Borrin Foundation.