For a long time now, DNA testing was viewed as this practice that was a reserve for medical health practitioners and only applied when the health expert deemed it necessary. The testing conditions were also different in that your sample was taken, tested in the lab, and the experts interpreted the results and their implications to you. The medical insurance agencies typically paid for the service.
However, there has been an increase in direct-to-consumer genetic testing, there are even websites that directly offer DNA tests to users. Consumers just need to submit a sample remotely; the experts test the sample and rely the results via the same channel. One can, therefore, gather the genetic information they need without necessarily having to involve the healthcare provider or the insurer. Some of the most common reasons why people ask for direct to consumer DNA tests include:
- Genealogy testing when one wants to know their ancestry
- Paternity tests
- Prediction about possible future health concerns
How consumer DNA tests are changing the health scene
One of the biggest concerns that come to mind when consumer DNA testing is mentioned is privacy. It is obvious that companies which offer consumer DNA tests get to interact with and keep a record of an individual’s most intimate biometric data. What remains to be seen is how well the companies can protect this information on behalf of the client. A while back, a social media giant was on the spot after failing to protect their consumers’ data, which led to a very long and complicated legal proceeding. This leads to the question of how much government and law enforcement agencies can access consumer DNA testing information and whether there should be privacy concerns when engaging these companies.
The most common security concerns
DNA information is uniquely yours, which means that if anyone has access to it, there is a lot that they can do with it which could be harmful to you. Some of the common security concernsinclude:
- Hacking-a while back a lot of DNA related data was found on a private server from a renowned genealogy testing service provider. While relevant DNA data was not part of the breached information, this shows that hacking is a threat to this sensitive information,
- The worry about who benefits from your DNA- when DNA tests are being taken by these companies, you will be asked to sign forms and some of the things that you need to sign for include consent to allow third parties to conduct research based on the data. Most people consent because they believe that pharmaceuticals could develop a cure for a disease or solve a significant human problem. However, in most cases, this does not translate into any personal gains. The testing companies do their best to track your data and make sure it does not fall into the wrong hands, but there are limits to what they can do to keep your information safe.
- There aren’t specific laws covering genetic privacy-unlike the other health sectors where laws have been made, revised and refined over the years, genetic testing, especially direct to the consumer is a fairly new concept. The lack of proper laws means that the consumers are stuck with the word of the testing company when deciding whether to trust them and the consequences of doing so.
- Interference from law enforcement-there has been reported that police have been using DNA information from genetic testing companies to track down criminals and that most of these companies are forced to surrender the information. While there is a lot of sensationalism around the topic, the reality is that law enforcement have been running their own forensics departments for a long time and if there were to be cases of such nature, the issue would probably be verifying data that they already have, and they would need legal permission to access this data from the companies.
Health insurance industry and DTC tests
The second major concern that comes attached with these DTC tests is the fact that they are not covered by insurance. Traditionally, when a doctor in an approved healthcare facility asked for a lab test, it was presumed that the medical cover would foot this bill, however, since most of these direct to consumer tests are voluntary and are rarely covered by insurance. This is, therefore, a disruption that the insurance industry will have to deal with and probably look for ways of working around.
How companies like Ancestry DNA and 23&Me are dealing with the challenges
Ancestry DNA is one of the two most popular consumer DNA testing companies. The company fully understands that while there are many privacy risks involved when consumers disclose their genetic data, the tests also have massive benefits. As a result, they have come up with a bulletproof privacy statement which safeguards their consumers against data breaches. Some of the conditions that have are that you as the consumer are the owner of the data and can delete it any time you wish. The company also always seek consent from you if they need to use it for other things.
23&Me is another company that is popular with direct to consumer genetic tests. The company clearly states that they do not provide any results from their customers to insurers or health care providers. This is because DNA data can be used by insurers to deny you certain products. Other ways that they allow their consumers to take charge of the privacy of their data is by allowing them to delete the data any time they wish. They also mention that they do not lease, sell or offer the DNA information collected for any reasons be it for research, or other uses. In case they need to use the information or give to a third party, they will get your consent first. You can see one of the best guides to DNA testing in this article from Honest Product Reviews.
These are some of the basic concerns and benefits which come with direct consumer DNA testing. It is essential to make sure that the company you entrust with your private DNA Data is trustworthy because this will assure you of safety and responsible use of the data. With time, stronger legislation will be developed to meet the changing needs of the industry, but until then, the best protection is before you share any data.