Scientists and Supreme Court justices continue to wrestle with issues of genetic privacy.
Until a few years ago, your DNA was your business. But with the growing ease of DNA sequencing, the use of DNA profiling in forensic science, and the expansion of networked databases storing genetic information, the issue of DNA privacy has come to the fore.
As genetic information becomes more widely available, the risk of your personal information falling into the wrong hands increases. Researchers from Tel Aviv University (TAU) and the Whitehead Institute of Biomedical Research in Cambridge, Mass. say new policies are needed to safeguard genetic information.
The scientists have developed an algorithm that can identify last names using only information gathered from Y chromosomes, which are passed from father to son. Professor Eran Halperin of TAU’s Blavatnik School of Computer Science and Department of Molecular Microbiology and Biotechnology says these findings show how easily genetic data can be used to compromise privacy.
“Having such data is critical to scientific research, so we must look for ways to minimize the risk, including better techniques for encrypting genetic data, education for study participants and researchers, and new legislation to protect such information and prevent its misuse,” Helperin said.
Using chromosomal data drawn from genetic databases, the researchers were able to identify the last name of one in every eight people from a sample of more than 900 American men.
Outside of the lab, courts are considering whether the collection and analysis of DNA is reasonable under the Fourth Amendment. This month, the Supreme Court will review a 2012 decision from Maryland’s top court that said taking DNA samples from suspects who have not been convicted of a crime without a warrant is a breach of “unreasonable search and seizure.”
Currently all states require DNA from those convicted of a felony, and at least 27 states and the federal government require DNA samples following some types of arrests, regardless of whether or not the suspect is convicted.
“DNA fingerprinting is a minimal incursion on an arrestee’s privacy interests,” according to a filing sent to the justices by the Obama administration. “A DNA profile is only a list of numbers; like a traditional fingerprint, it exposes nothing about a person’s physical characteristics, propensities, or medical conditions.”
Fingerprint evidence has been used to confirm or disprove a suspect’s identity in criminal investigations for more than 100 years.
However, Dr. Sheldon Krimsky, Ph.D., of Tufts University and the Council for Responsible Genetics and co-author of Genetic Justice, says there’s a big difference between fingerprints and DNA.
“Fingerprints tell you the curls on your thumb, but they won’t tell you anything else,” Krimsky said. “You have lots of information in DNA, including your predisposition to disease and whether you fathered a child, and they can’t get that out of a fingerprint.”
Even if the genomic data is originally stored anonymously, it may be used later to invade a person’s privacy—and that of their family. For instance, insurance companies could use genetic information to determine if you are at a high risk for a particular illness and to ultimately deny you coverage.
In 2008, President Georg W. Bush signed into law the Genetic Information Nondiscrimination Act (GINA). It was designed to prohibit employers and health insurance companies from using genetic information. At the time, Senator Ted Kennedy called GINA the “first major new civil rights bill of the new century.”
But civil rights groups, scientists, and federal and state prosecutors continue to wrestle with privacy issues associated with the ever-expanding role of genetic data.
“As our knowledge of genetics and its capabilities continues to expand, it brings with it new challenges to privacy,” said the The Electronic Privacy Information Center about the indefinite retention of DNA samples. “Once an individual’s DNA sample is in a government database, protecting that information from future exploitation becomes more difficult.”