Keeping your Genes private

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Privacy and data security are huge concerns for consumers with today's extensive use of technology for acquisition and storage of information. The threat of personal information being misused is emerging in the growing DNA sequencing market where consumers are yearning to discover their roots and genetic origin. The privacy concern in this arena is that the consumer maybe giving the company rights to sell their sequenced DNA to data brokers, life insurance companies, etc. This checklist provides a roadmap of the industry and how to protect your DNA sequence from being bought and sold like a common commodity.

  • Understand the terms of sale and conditions of the company you are going to use.
    • Each company reserves ownership rights in your DNA samples, results, and reports.
    • Note: This means that whatever company you use has rights to reuse your DNA results etc. and you have little or no recourse.
  • Research the companies individually, while they do reserve rights in your DNA some will protect the sample more rigorously and will be more discriminating with future use.
    • Ex: My Heritage ® says they will only use the, "minimum amount necessary to provide the service..." Thus providing a high level of protection
    • Ex: 23 and Me ® will use your data more liberally for the stated purpose of improving their service. This is a more opaque contract that leaves the door open for the company to do a lot more with your information than say My Heritage.
  • Opt-in services
    • Some of the companies provide "opt-in" and "opt-out" options. If they do, read the terms and decide if you want to opt-in or out of these studies etc. This is a good way to further protect your information from unauthorized or unknown uses.
  • Consumer protections and pitfalls
    • The Genetic Information Nondiscrimination Act (GINA) protects this type of information from being used against you for health insurance purposes.
    • GINA does not protect a Life Insurance company from refusing to provide you with health insurance based on the results of your DNA sequencing.