We usually think of DNA carrying the secrets of our biological life, including health and potential disease. But now scientists have used DNA sequences to determine identities.
It's not that your name is written in the DNA letters that make up the coding sequence of your genome. Rather, the researchers were able to make the connection between a person's DNA sequence and their name by connecting information in public internet databases. There are a growing number of scientific studies where people submit their DNA for analysis of the genetic information and its relationship to various health conditions, genetic traits, ethnic studies, and population tracking. The DNA is usually submitted for the analyses and then identifiers are removed from any published information. People are usually told as part of informed consent that no personally identifying information will be included. Dr. Yaniv Erlich and colleagues at the Whitehead Institute published a paper in the journal Science showing that they could use genetic information published anonymously, and then use online genealogy databases to determine the identities, including surnames, of almost 50 people who had participated in the genetic studies. Dr. Erlich said that with the type of genetic information they used:
"It only takes one male. With one male, we can find even distant relatives.''
The database search relies entirely on free, publicly accessible Internet resources. The discovery of this privacy loophole in keeping DNA donors anonymous has caused concern especially in the research community. When Erlich and his colleagues found that they could uncover the personal identity of the DNA donors, they contacted the National Institutes of Health to alert them to the problem.
In the news story in Science, Laura Rodriguez, Director of policy, communications, and education for the National Human Genome Research Institute, said that federal law prohibits health insurance companies from using a person’s genetic data, but many people worry that the law does not go far enough, and that there is nothing stopping companies from using genetic data to determine policies for life insurance and long-term disability care. Rodriguez co-authored an accompanying policy article that discussed the need to address concerns about genetic privacy without dampening the sharing of research results.
The federal law she references is the Genetic Information Nondiscrimination Act (GINA), signed into law in 2008.