NHGRI researcher uses a pipette to remove DNA from a micro test tube.DNA testing can raise some questions as well as evoking excitement. On the excitement side of things, it’s an opportunity to learn about the ways to prevent diseases being passed down to your children, learn about your ancestry, and to be more self-aware of your health. In this blog post, we want to provide a list of the most common DNA testing questions and answers that are also experienced as part of the genetic testing experience.

Question #1: Is my DNA destroyed or stored after a genetic test?

It depends on your service provider’s Terms and Conditions whether your DNA is stored in a “biobank” or destroyed. If the DNA is stored, the service provider will use your DNA code to discover new markers linked to diseases and phenotypic traits.

Why we, at GeneYouIn, choose to destroy your DNA after a test is complete:

After a test is complete and results are delivered to the patient, we destroy the DNA. Since your DNA does not change, it is more beneficial to the service provider and to the patient to destroy the physical DNA samples and store the DNA information as encrypted data for ultimate security. The genetic data needed for genetic association analysis is encrypted and stored on the databases and is more secure than the physical storage of DNA. If you are in doubt, always ask your testing provider whether your DNA is stored or destroyed after completing a genetic test.

Question #2: Has the era of genetic privacy ended?

Some people are concerned that they may be identified through genetic data. Technically, it is possible to re-identify a person based on genotype data from large scale genetic datasets. For example, Latanya Sweeney was able to identify data by cross analysis of voter lists and other data registries. Therefore publicly funded studies are not allowed to release their datasets without extreme precautions to prevent subject re-identification. Another concern is that “your DNA can be hacked, stolen, and used for targeted marketing”, which was first raised by Robert Gonzalez on “Is the Future of Marketing in Genetics”. He states that with access to information recovered from personal genomes, a person can be made very searchable online. As long as your service provider is committed to keep your data confidential your genome data is secure. At GeneYouIn, we disagree with this vision for the prime reason that we want to research and prevent diseases, not to unethically monetize on genetic information. Our aim is to preserve the client’s privacy.

Question #3: Is my DNA sold to third party advertisers through “Genetic marketing”?

Recently, there was a Wired article: “Selling Your Most Personal Item: You”. It explains the emergence of a new advertising company, Miinome, selling a person’s DNA to marketers to show personalized advertising based on a person’s genetic make-up. Miinome are planning to offer genetic sequencing as part of the free service: “But you’ve heard that before – on the internet, whenever anything is “free”, you are the product”. In a recent interview to Fast Company’s “Inside 23andme Founder Anne Wojcicki’s $99 DNA Revolution” Patrick Chung, a 23andMe board member said:

“The long game here is not to make money selling kits, although the kits are essential to get the base level data …. Once you have the data, [23andme] does actually become the Google of personalized health care….Genetic data on a massive scale is likely to be an extremely valuable commodity to pharmaceutical companies, hospitals, and even governments”

GeneYouIn will never sell your DNA or your information to third parties. Instead, we will deposit selected mutations linked to selected disease in public databases to facilitate research and discovery.

Question #4: Health and Life Insurance

Some people are concerned about potential implications of the genetic test on their health and life insurance. According to current laws people seeking insurance are obliged to disclose their knowledge of existing disease as well as family history of disease. Knowledge of genetic susceptibility to serious disease cannot be used to deny health and life insurance in all developed counties, except for Canada, due to the Genetic Information Non-discrimination Act (GINA). Similar law is currently under consideration in Canadian Senate and expected to be approved sometime in 2014. These laws protect consumers from discrimination and ensure health coverage, however they set limits to the coverage protecting insurance providers. Insurance companies cannot request genetic testing to set insurance rates. However, failure to disclose the knowledge of genetic susceptibility to serious disease may invalidate insurance policy in case of serious illness. Therefore, we recommend our customers to get insurance before getting into disease predictive testing. Please note that drug response predictive testing does not affect insurance in a material way because the vast majority most of people in population carry mutations that make them more or less responsive to some medications.

What’s next?

Do you have a concern or question that we didn’t answer here? Share it in the comments section below, on Twitter with #AskGYI, or contact us with your question. If you would like to learn more about genetic testing, continue reading this related blog post: “DNA Testing Cost: What to expect from a $99 DNA test”. If you enjoyed this post and want to read more, please follow us on Twitter or become a fan on Facebook. Image source: By Maggie Bartlett, NHGRI [Public domain], via Wikimedia

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