Ownership of Genetic Information

What happens to your genetic information once you’ve obtained your results from a genetic test or after you have completed a research study?

Today, individuals may seek genetic testing in a medical setting, or through a Direct-to-Consumer (DTC) company, for the purpose of understanding disease risk, ancestry, and/or paternity. There are also many research studies both in the civilian world along with those in the government and military that utilize genetic testing to further our understanding of genetics, healthcare, and diseases. Who does this information belong to? Do you own your information? After all, it did come from your body. Or does that company, hospital, or research institute now own the information because they produced and now store the data? Can these groups now use your genetic information for other purposes? Can they perform further research or input your DNA into a database for future use?

Even if the particular DNA sequence is “deindentifiedâ€, meaning it is anonymous and can’t be tracked back to an individual, questions about rights of ownership remain. Once the tissue, or in this case DNA, leave the body, who then has ownership over those cells?

The government has yet to establish laws that set clear precedent with regards to ownership of biological property. The existence of this legal “grey area†however does not mean that courts have not heard cases involving DNA/tissue ownership. In fact, of those cases presented in court, most rulings have been against the patient. The interpretation of the courts is that once the DNA/tissue leaves the body, it is no longer the property of the individual. The courts seem to be relying on the informed consent contracts that patients sign prior to any procedure, which establishes clear guidelines for the future ownership of said materials.

There is one case that has gone against this trend, though it should be noted that it was settled out of court. The Native American Havasupai tribe filed letters of intent to sue Arizona State University (ASU) for misuse of their biological property. The university conducted a study of the tribe under the original pretense of researching chronic diabetes in tribe members. The researchers collected blood samples from various individuals and stored them at ASU. The Havasupai later discovered that after the original study was completed, their blood samples were used in other various studies, far beyond the scope of diabetes research. ASU decided to settle out of court with the Havasupai tribe, but if the courts did get involved, it is hard to tell which way they would have ruled.

CLICK HERE to learn about Henrietta Lacks
CLICK HERE to read a case study addressing the ethics of ownership of genetic information