-- JonathanKoppell - 14 May 2013

Introduction

Will Genetic data help or hurt you?

Probably both…

DNA Sequencing has become faster, more reliable, more efficient, and most importantly, cheaper. With the decreasing cost of full genome sequencing and the rise in direct to consumer genetic testing, the potential for abuse of easy access to such information has substantially increased. As genetic information becomes more available, the risk of your personal genetic data falling into the wrong hands increases.

Your DNA can be picked up from the saliva left on your coffee cup, or even skin cells you unknowingly left behind while doing errands. Taking these facts and the reality of portable of portable DNA sequencers under consideration, there is a very real privacy concern. The government has long been building a DNA database. All states require DNA collection from individuals convicted of a felony. Additionally, the federal government and 28 states require the DNA collection and analysis of some arrestees. “Once an individual’s DNA sample is in a government database, protecting that information from future exploitation becomes more difficult.” From your genetic data, the government, using their database, can identify your relatives, and likely identify you.

Technology

Unlike, the disclosure of a person’s genetic data through scientific research, cheap and portable DNA sequencing technology presents a much different concern. A DNA sequencing machine can run anywhere from $50,000 to $750,000. A new technology, known as “MinION,” will soon be released on the market for approximately $900. This technology is USB powered, and can accept blood, plasma, and serum for immediate on the spot analysis. Capable of sequencing 100 million base pairs within six hours, it has immense benefits and potential for medical treatment. However, the development of this technology only adds to privacy risk.

Current Practice

In addition to the States, six federal agencies: The Department of Homeland Security (DHS), the Department of Defense (DOD), the Department of Justice (DOJ), the Department of Health and Human Services (HHS), the Department of Veterans Affairs (VA), and the Department of Transportation (DOT) maintain genetic databases.

About half of the states have varying policies governing genetic privacy; these protections do not specifically prohibit the abuse of whole genome sequences. Even worse, most of these states do not protect against the improper collection genetic material without consent. “While GINA prohibits genetic discrimination in the health insurance and employment contexts, it does not regulate use, access, security, or disclosure of genetic data, and does not specifically address whole genome sequence data or information.”

Implications

What happens when technology develops to the point where by simply touching a door knob?

Your DNA will be analyzed and you will be identified even if you are not in the database being searched. No search warrant needed? There are a lack of protections in place and legislation has not kept pace with technology.

Not only does the government have the ability to find out what you search, what you e-mail, what you talk about, and what you care about; they now have the ability to detect who you are, confirm where you are, the identity your family members, and all of the correlations that come with genetic data. This includes your risk for certain diseases, probably intelligence, propensity for violence, etc…

What are the policies regarding the use of this information. Can anyone really be trusted with this information?

How can you be sure that genetic data used for medical purposes will not be used by a government agency in order to locate you, your family, and when complemented with social media data, identify all of your interests, likes, and desires?

Future Protections?

Since 2006, the cost of sequencing a genome has decreased from $10 million to potentially $900. The cost will only decrease as technology further develops. The risk of genetic data abuse is no longer theoretical, it is very real.

Many issues with respect to genetic privacy protection remain to be resolved and explored.

Is the government free to use criminal DNA data in their pursuit of persons they know not to be in their database, but possible related to a person in their database?

Are individuals afforded a state property right over their genetic samples and their sequences?

Does the government have the right to forgo ordinary rules requiring a warrant and probably cause before a DNA sample is retained by the government? Is there protection in the fourth amendment? We hope to soon find out when the Supreme Court issues a decision

Can a right to genetic privacy be derived from the Constitution?

In order to prevent further violation of our individual liberties, uniform laws and regulations must be enacted to provide sufficient privacy protections for genetic data.

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