DNA Privacy and Selling Your Human Data
Everyone has seen the commercials, you can send in a sample of saliva and a company will send you back a report tracing your family tree all the way back to the garden of Eden, or Ireland; or maybe a combination of New Zealand and South Africa. You can even send in a sample from your favorite hound and find out if your pup is 37% Labrador and 63% Poodle, which would make it a Labradoodle. It does sound fun. Even intriguing.
DNA, or deoxyribonucleic acid, is a molecule that holds the genetic instructions for all forms of cellular life. It is composed of two coiled chains that form a double helix. The genetic instructions are for the function, development, growth and reproduction of all life as we know it. It is also unique to each human being, much like the ridges of a fingerprint.
Think of DNA as your human data. Much like data on a server, or a microchip, DNA contains your personal data. With today’s technology, your DNA can be used to create a composite of what you look like, brown hair, green eyes… right down to the dimple in your left cheek. It not only holds the information about your human past, but also your present and your future. It can give insight into diseases and illnesses that you may not have even discovered yet.
Testing your DNA is relatively simple. You are generally given a cotton swab and asked to gently scrape the inside of your cheeks with it before inserting it into a vial or solution for processing. Doing this will loosen and pick up epithelial cells as well as saliva which should be adequate for a good test.
DNA testing can be specific. Results can be used as legal documents in court. These DNA tests do require that you make an appointment to have the DNA samples collected at a lab, to ensure that the samples meet special evidence collection requirements. Professionals determine that the sample is collected from the correct individuals, seal the results and ship the samples to the lab. At home DNA tests, do not have the same benefits as being able to be used in a court of law. However, once the sample is collected, it is put into a special tamper-proof envelope, sealed and once received by the lab, the chain of evidence remains intact.
Results can be made available from the lab for simple paternity tests in as little as 3-5 business days, although other types of DNA testing can take longer. There are many different types of DNA testing. Different types include paternity testing, immigration testing, sibling testing, twin testing, single party, genealogy, maternity, male lineage, and legal tribal enrollment. There are still more forms of testing available for different circumstances. Knowing why someone needs a DNA test is important to choosing the right type of test to get optimal results. It is also important to know what will happen to your DNA data once the testing is completed.
Your DNA Rights
There is a dark side to DNA testing that is currently not being widely addressed. As most citizens remain dazzled by the commercials of finding long-lost relatives, or having a breakdown in percentages of their biological inherited nationalities, the same DNA companies are lobbying Washington to strip the American public of the rights to their own information.
Before doing any type of DNA test or giving up your DNA for any reason it is important to know how that information is going to be used, stored, and who the company intends to sell your genetic information to. Companies are in business for one thing, profit. They sell you the test, they sell you the kit, then sell you the results. The same company may also sell that information to anyone who pays. It’s the name of the game. Right now, there are no specific laws keeping them from doing so, just the honor system. Private citizens have trusted other large companies with lesser data about themselves on the honor system before, and that’s gone really well so far, depending on which side of the bank statement you’re looking at.
The same companies that display loving family commercials, are the same ones that have formed and back the Coalition for Genetic Data Protection. The Coalition states on its website that they are seeking is uniform and reasonable regulations to guarantee ethical and responsible handling of genetic data.
Americans would not be surprised to find at the top there is a prominent DC lobbying firm backing the coalition and pressuring to set the rules that best fit their agendas. The end goal is to shape privacy rules for an industry that operates now on the honor system. However, the American public should be extremely wary.
As most lobbying firms know, those who define the rules are the ones who take advantage of them. A representative for the coalition has made declarations that they are just being great stewards of privacy, and in the same breath that while they seek provisions and rules, they want to be sure that no laws be placed on DNA testing companies that are more stringent than those that apply to Facebook or Google. If that doesn’t worry you, there is more to think about.
Selling Your Humanity
For those whose job is to lobby DC for a price, have they sold the idea that your humanity doesn’t belong to you? Are you willing to be stripped of your rights to your own genetic data? Do you trust Facebook? Google? Other experts, who work in the field of DNA, believe it would be a huge mistake to allow this type of approach to create regulations for the DNA industry.
Basic or generalized regulations could not cover the amount of exploitation that can become of genetic testing and the information contained in its results. What becomes of your genetic data that states that you have a predisposition to diabetes, cancer, or you have certain markers that indicate you will likely develop a serious long-term health issue? Nothing prevents companies from currently exploiting this information and selling it to health insurance companies or even current and future employers. Nothing is preventing banks from denying you a mortgage because they know something you don’t.
A recent example of genetic exploitation can be shown in a demonstration of how stored genetic data pointed to the case of the Golden State Killer and the way in which he was finally apprehended. It was through DNA. Not through his own sample, but from a sample from a relative that showed familiar markings that investigators followed through to locate the family member they had been hunting for years. When you give up your DNA, do you have the right to give up information on your brothers, cousins, aunts and uncles, too?
Your DNA is your humanity, your human signature on this planet. Does anyone have the right to exploit that information? If your genetic code links to others in your family, do you as an individual even have the right to sell your genetic information or give permission for its use? Currently scientists have demonstrated that using enough data, it is possible to reverse search through DNA strings and attach it to someone’s name, to someone’s identity; which could have tragic implications.
There are companies online that allow users and ancestry hobbyists to upload their genetic profile to a public genealogy database. The scariest part is that anyone using these public databases can generate maps of specific genetic traits. There are enough genetic profiles openly available on the internet to currently identify nearly every white person in the United States and their current location. This should frighten everyone. It should be more than terrifying to know that one of these major genetic databases was recently purchased by a corporation with ties to law enforcement and the FBI. The DC lobbying firm may be getting somewhere with its discussions on DNA privacy and regulations, as there is now an interest from the government to track its citizens via DNA data.
Many companies are exploiting the current system of no regulations on the DNA industry. The US is only just beginning to enact basic privacy rights on personal information like social security numbers and health records. It may be some time before solid rules are passed that would protect American citizens from abuse of the DNA records.
Recently a new ruling was made to begin collecting DNA samples from every immigrant who passes our borders. These samples are entered into a government database and checked against unsolved crimes. These samples are expanding upon the current national DNA database that is kept on American citizens. Is this a form of exploitation?
To do a valid test, one has to be able to have the right to information and understanding to consent. With language, technology, and personal distress barriers when newly entering the U.S. and asking for asylum, do any of these immigrants truly have the ability to consent to their genetic data being profiled, stored, or used in the future?
Demanding DNA Privacy
Americans should demand more privacy protections in many areas, including DNA. It should be a priority to warn the public against the abuse of human data as much as any other form of data. In 2008, Congress passed the Genetic Nondiscrimination Act or GINA, which protects citizens from having their genetic information used to discriminate against them for health insurance reasons. However, they knew then, and they know now, that they did not go far enough.
The federal act GINA protects against genetic discrimination in health coverage and employment. California broadened the coverage in their state to include housing, mortgage lending, adoption, education, and public access. As the public becomes more aware of the ability to abuse genetic information, the scarier it becomes. The idea that anyone with a keyboard could be at the forefront of the abuses, will make everyone start to feel like we are under a microscope. Maybe we should be feeling that way.
The American Civil Liberties Union has a Speech, Privacy and Technology Project that represents American’s right to privacy in the genetic field. A staff lawyer led a discussion on how forced government mass collections of DNA and database of American citizens has turned what could be used for good purposes, like in solving a criminal case; and twisted it into something less savory like the mass surveillance of the population. There is no more autonomous society in America. We should be under alert.
HIPAA provides some protections, as when your genetic information is part of your medical record, it cannot be shared without your consent. That is, unless the government requests it under the Patriot Act Section 215. This request can be made only by high ranking FBI officials such as the Director, Deputy Director, or the Executive Assistant Director for National Security and only with a court order for national security purposes. If DC cared at all about the citizens and its privacy of data, at minimum it would require HIPAA standards to all genetic data as it contains both genetic and medical information. If people insist, these standards and higher will be enacted to ensure that they are no longer taken advantage of or surveilled like numbered rats in a maze.
Are You Ready For DNA Privacy?
It is not a matter of if, but of when. Companies and individuals across the United States will eventually have to comply to genetic data privacy regulations. The current GINA only goes so far, HIPAA could be the next step, but likely it will have a more rigid regulation structure with much higher costs for breaking the rules. The fines will be much higher including long jail times. Being ready on day one to handle redacting documentation that contains any form of genetic data will be a must.
Just like any other form of personally identifiable information, medical records, or credit information – the company handling any form of genetic data will have to follow rigorous rules for redaction or face consequences. Failure to do so will cost them their business. Having a comprehensive redaction software system that can handle all forms of documentation redaction, video redaction, audio redaction and more, will benefit most enterprises. A trustworthy system that updates regularly, stays up to date with new rules and regulations, works well with other agencies needs, such as law enforcement, health centers, schools and more, will work out best. Find the system and training your employees now, before regulations become a requirement will keep your business ahead of the privacy laws.
Staying ahead is what it’s all about, isn’t it?