It is the assessment from this article that at this time it is very difficult to understand and control who has access to your genetic data. There are not enough privacy protections in relation to what companies who analyze your genetic data are then able to do with that data after they have gathered it.
Currently the primary legislation that helps to protect consumer's privacy in relation to their genetic data is called the Genetic Information Nondiscrimination Act.
One of the key concerns for consumers is whether insurance companies and related payers might potentially get access to that information and be able to increase premiums based on possible risk factors identified within someone's genetic code.
This article at Kaiser Health News seems to indicate that there are some real concerns that we should be aware of: "In general, long-term-care insurers can indeed use genetic test results when they decide whether to offer you coverage. The federal Genetic Information Nondiscrimination Act prohibits health insurers from asking for or using your genetic information to make decisions about whether to sell you health insurance or how much to charge. But those rules don’t apply to long-term-care, life or disability insurance.
When you apply for long-term-care insurance, the insurer may review your medical records and ask you questions about your health history and that of your family. It’s all part of the underwriting process to determine whether to offer you a policy and how much to charge."
Before participating in Direct to Consumer Genetic Testing be sure to read that company's policies about who they might potentially share that data with beyond you.
Examples of these types of companies include:
- Gene by Gene
- Laboratory Corporation of America
- Mapmygenome India
- Positive Bioscience
- Quest Diagnostics, Inc