Understanding Genetic Information and Privacy Concerns

If you follow much health news, you’ve probably noticed the expansion of genetic testing in recent years. Individuals with enough disposable income can now purchase packages of genetic tests focused on health and genealogy for their own personal use, in addition to genetic tests physicians might conduct, such as for BRCA1/2 mutations. All of this testing and information gathering naturally raises privacy concerns, as consumers wonder if their genetic information might be used against them, such as when shopping for a health insurance policy.

The Council for Responsible Genetics has created an online “Consumer Genetic Privacy Manual” to help people understand this relatively new technology and its implications, providing information for the public about the basic science of genetics, genetic discrimination (including existing nondiscrimination acts related to health insurance), current privacy concerns, gene-associated diseases, genetic tests, informed consent, and other issues. The material seems intended for a U.S. audience, and much of it is somewhat technical, but it may be a good starting point for individuals seeking to understand these issues.

For those interested in policy, Genome.gov has more information on genetic discrimination, including legislation, White House statements, and reports. For those who would like to learn more about genes and associated conditions, Genetics Home Reference is a good resource, and the Talking Glossary of Genetic Terms may be a useful reference for understanding and pronouncing the relevant terminology.