When your DNA isn’t yours anymore?

Jeff Heizmann
Zenome
Published in
3 min readSep 13, 2017

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Direct-to-consumer (DTC) genetic testing is becoming increasingly popular. It allows individuals to obtain information about the characteristics of their DNA hidden in the genetic code. Genetic tests can determine ancestry, health and drug responsiveness. There are two main two reasons why this is possible now:

  1. DNA can now be examined and read and the testing procedure is becoming less expensive than it used to be. There are many scientific studies that connect your genomic features to the parameters of your body.
  2. DNA is a molecule where all genetic information is stored. The cost of reading a person’s DNA depends on the technology used and varies from $100 to $2000, depending on the amount of information that a company has to output.

There are many companies, who work in the field of genetic testing worldwide: 23andMe, Any Lab Test Now, Color Genomics, Counsyl, Direct Laboratory Services, Gene by Gene, HealthCheck USA, Home Access Health Corporation, Laboratory Corporation of America, MyMedLab, Mapmygenome India, Positive Bioscience, Quest Diagnostics, Request A Test, Sonora Quest Laboratories, Theranos, Walk-In Lab, WellnessFX, Xcode Life Sciences;

More than 2 million people were tested only by 23andMe. These companies have a very similar working pattern. Your biological material (usually blood or saliva) is mailed to the genetic testing company. They isolate your DNA from cells. Then they use modern technologies to find your individual genetic features and represent them as a list of genetic variants. What’s next? Every company has databases and algorithms that connect those genetic variants to your organism features, such as body parameters, disease risks, drug responsiveness and ancestry. This information comes from the data mining of scientific studies. There is a collection of genetic studies, stored at European Bioinformatics Institute web site. The latest version of the catalog contains 50086 genetic features to traits associations (by r2017–08–31). Most of these associations are not applicable to DTC genetic testing so the companies can use ~10000 to create your genetic report. This report is then sent back to the user.

But this is just the tip of the genetic data iceberg.

Let’s do some assumptions:

  • The amount of DNA isolated from your blood or saliva sample is much bigger than what is needed by the DNA reading process, so it can be stored and read later with more detail when technology will be less expensive.
  • Even when the company uses the least expensive method to read your DNA, they measure about 600,000 genetic features, and can interpret only ~ 10.000, so the others are just your contribution to company’s database.
  • So, you don’t own your own genetic information.

Companies collect information about you and you pay them to create their database. Today there are several examples of companies that sell user’s genetic data to pharmacological companies. One company that does this is 23andMe. Data about your health stored in medical records can be tracked from your internet activity. This is becoming more and more expensive as you get older. So why would you allow someone to use your genetic data when you have the birthright for it?

The Zenome platform is designed to work very differently. You choose your data provider, who reads your DNA. Your genetic data is stored securely and controlled only by you. You can choose from different genomic reports and share only the data, needed to create this report.

Interested? Read our white paper.

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