Introduction

Is Genetic Research more dangerous than Facebook?

One could definitely make the argument. In a recent study, where volunteers had been assured that their names would not be linked to their samples, researchers were able to identify almost 50 anonymous volunteers.

When you share information on Facebook (or other social media websites), you are voluntarily identifying yourself. However, the people identified in this study only volunteered the use of their genetic samples under the premise that it would be anonymous. Unlike the voluntarily disclosure of personal data in exchange for a service; these people only volunteered their genomes for the greater good and in the interest of science.

The subjects were not ignorant; no one realistically thought that these people could be so easily identified. It only took a single research 3-7 hours using the internet and publically accessible websites to identify the subjects of the study. Disclosure of personal information through social media and other online services reveals information about you, and the people whom you have relationships with (both online and in person). This information has proven to be very valuable to corporations, law enforcement agencies, and the government. However, the disclosure of your genomic identity is likely more troublesome.

DNA reveals information about your risk for certain diseases, and many other traits. While the data is not 100% accurate, the accuracy of these correlations improves every day. Your genetic data not only reveals information of your own-self, but also the information of all of your blood relatives. Disclosure

The disclosure of your DNA data can occur in different forms. A genetic testing company may incidentally leak your data or the results of your tests. Like the people in this study, even anonymously posted data necessary to research is dangerous. In the near future, as sequencing becomes cheaper, portable, and more efficient, we face additional risks of disclosing our genome. This could include the sequencing of skin cells we leave behind everywhere we go. As we edge closer to the idea of personalized medicine, our genomes will likely be sequenced on a regular basis, risking additional exposure.

For now though, perhaps the most troubling and likely mode of disclosure is the voluntary use of genetic samples for research which in the interest of science, end up listed in a publicly accessible database. While one can argue that if you stop sharing your information with social media, you can substantially lower the risk of disclosing your personal data. However, the disclosure of DNA sequences used in studies presents a more difficult problem and will likely require a complicated solution. The disclosure of genetic data used in studies is essential to scientific research and the research community. The data is important to disclose, yet vulnerable to exploitation.

At risk are the studies which aid and act as the backbone of our progression towards personalized medicine and earlier disease detection.

Use and Protection

The question of how DNA sequence data can or will be used is not a novel. Here, a single researcher identified the people in this study from the research data. However, what will be the consequence of a database marketing company such as Acxiom obtaining DNA sequence information. It was easy enough for a single researcher to do it, using publicly accessible databases. It is likely much easier for a massive data collecting company to do the same, although probably more efficiently. This fact opens up many troubling questions and potential issues:

When these types of companies attain DNA sequence information and are able to link it to you, a particular individual, how will it be used?

Will you be bombarded with advertisements for medications which may relate to an illness associated with a particular genetic sequence?

Even worse, will your relatives be bombarded with these same types of advertisements?

Will health insurance or life insurance companies be able to purchase the information and use it against their customers and potential customers?

Will employers and corporations purchase the information in order to discriminate against employees and potential employees?

What will (or does) the government do with this information, how will it be used against you?

After all, this information is in a public database, available to everyone. There are no restrictions on its use.

While a federal Genetic Information Nondiscrimination Act which supposedly protects DNA information from being used in a discriminatory matter, many experts regard the legislation as inadequate and insufficient. Will legislation be able to keep up with the rapid development of information collecting, analytic, and marketing companies?

Conclusion

With the decreasing cost of full genome sequencing and the rise in direct to consumer genetic testing, the potential for abuse of intentional and inadvertent disclosure of such information has substantially expanded.

DNA information can and will be used in confidence against you and your blood relatives. For those who remain skeptical, one man in the study “was identified because his great-grandnephew had submitted a sample to a genealogy database.” The disclosure of genetic data presents a real threat.

After this study was published, the National Institute of Health (NIH), removed the ages of participants from the public database and put it under “tighter control.” Will this really be sufficient to ensure anonymity? Even if it actually does, it will not hold for long.

The ability to discover the identity of anonymously posted genomes necessary to the publishing of a study, poses a difficult challenge. Scientists will likely have to find a better, more privacy sensitive method for sharing data, while protecting the identities of individuals. However, restricting access to genomic databases will slow research. This presents a difficult balance, the progression of scientific research vs. privacy.

One must ask, is the idea of making genetic data anonymous a mere illusion?