DNA Testing, Genetic Information and Your Privacy

Your medical records: what do they say about you? Perhaps they contain information about past diseases or surgeries, medical concerns, a history of your prescriptions, or information about mental issues or hospitalizations. Of course, thats kept private from those outside your doctors office. But what about your genetic information? How does that fit in, and why does it matter?

DNA testing can be used for a host of reasons, and researchers knowledge and ability to test and analyze genetic data is increasing rapidly. Some common uses for genetic testing include:

• confirmation of a doctors diagnosis of a genetic disease
• forensic testing for legal purposes (i.e. testing blood at a crime scene)
• paternity testing to determine a childs biological father
• screening embryos and newborns for genetic disease
• testing adults for heightened inherited disease risk
• testing for matrilineal or patrilineal heritage for the purpose of uncovering ethnic roots and tracing a family tree
• testing prospective parents to see if they are genetic disease carriers.

Why Genetic Privacy Matters

As is evident by the list above, there is an ever-increasing amount of information available via DNA test results. But who really wants to know about your genetic information? Why is privacy such an issue?

Consider what you could potentially learn from a genetic test. Lets say you learn that you have a high risk of developing a fatal cancer, are prone to depression, or you're a carrier of a genetic disorder that could be passed on to your future children.

Your DNA is of more interest than you may think. What if your genetic profile was openly available, and no laws were in place to protect that information? Consider the following:

• Employers (or potential employers) may want to know whether you have a high risk of falling ill often or developing a genetic disease, rendering you unable to work.
• Family members may want to know what your disease risk is to determine their own risk.
• If you are in a witness protection program, your true identity could be uncovered via your DNA test results.
• If you've given a child up for adoption, they may look to your genetic information to determine biological parentage.
• In the case of a celebrity or public figure, the media may take interest in genetic information to report it on the news or predict the individuals future health.
• Insurers will want to know what your disease risk is, and may opt not to insure you if you will be of high cost to them.
• Potential mates may want to know if you are a genetic disease carrier and use this information to determine whether or not to start a family with you.
• The government may want to learn about your genetic profile for the purpose of gathering census information or predicting your need for government health assistance in the future.

While many of these scenarios may seem improbable or far-fetched, they are all plausible without genetic privacy laws in place. This is why it has become increasingly important to implement and enforce laws about genetic privacy to protect individuals genetic information.

Genetic Information: Protecting Yourself

As the field of genetics continues to evolve, government regulation has been enacted to protect individuals privacy. Some of the most important rulings of the last decade include:

1. The Genetic Information Nondiscrimination Act: Signed by United States President Bush in 2008, this important act prohibits discrimination in the workplace or by insurers on the basis of genetic information.

2. DNA Retention Made Illegal in the UK: In 2008, the European Court of Human Rights ruled that the worlds largest genetic database, based in the UK, was a violation of individuals privacy. The court determined that individuals who have not been convicted of a crime are presumed innocent, and therefore retaining their genetic information indefinitely is illegal.

3. The Health Insurance Portability and Accountability Act (HIPAA): In 1996,HIPPA was adopted for the purpose of protecting individuals health informationand keeping this information private.

Resources

Electronic Privacy Information Center staff. (2009). Genetic privacy: Top news. Retrieved July 8, 2009, from the Epic Web site: http://epic.org/privacy/genetic/.

Mehlman, J. (1999). The privacy of genetic information. Retrieved July 8, 2009, from the Doctor Will See You Now Web site: http://www.thedoctorwillseeyounow.com/articles/bioethics/geneticinfo_1/.