Paternity testing privacy
An interesting snippet of information from Anglia DNA Services as reported in the UK’s Daily Record reveals that up to 1 in 3 paternity tests performed on what was presumed to be the biological father, actually showed no relationship. While this information might sound shocking or abnormally high at first glance, it is probably quite reasonable. Parents that are compelled to seek out and submit to DNA testing do so because there is already an element of doubt regarding the child’s parentage. Most families don’t have any doubt as to the parentage of the child and never seek out paternity testing. Hence out of all the individuals that get tested there is a higher probability than an average non-tested family that the biological father may not be identified correctly by the mother.
What is more food for thought though is that the company was free to release this statistic. Obviously there is no personal information attached to this news release but it raises some questions that you might want to consider if you are looking for testing services of your own.
There is emerging legislation both here and in Europe about the rights of people that have had DNA fingerprinting conducted and the information it generates, but it’s not clear yet. For example most DNA testing companies promise privacy and won’t release individual results to the public or to Health insurance companies, and legislation (though not tested yet in court) is also emerging to ensure this. But there is always a grey area. What happens to the genetic testing data if the testing company gets bought by another company, what if it’s a health insurance company? What if your testing company goes bankrupt?
Genetic testing legislation
Because these privacy questions have been raised for some time now, legislation has been introduced (the Human Tissue Act) to deal with some of the more common concerns.
As noted above the paternity testing industry has expanded rapidly and it is relatively easy to take a DNA paternity test. Virtually all vendors allow you to order their kits via the internet allowing you to perform the DNA collection in the comfort of your own home. The notable exception to this is if there is legal applications for the DNA test results , in which case you would need to have the samples identification verified by an accredited expert.
This ease of use belies several hidden concerns that are not often considered prior to utilizing the tests, such as emotional issues. In all cases it is strongly suggested that counseling is sought before and after taking a paternity test. Prior to the rise of the online patrenity testing industry, doctors such as you physician took a more active role in the DNA tests. But since the ease of access to these types of tests obviates the need to have a doctor involved the counseling aspects that were normally associated have been reduced or lost entirely. The most common outcome from this situation is the ethical concerns on getting the proper parental consent that are raised but not addressed from the usage of the DNA kits.
The Human Tissue Act
Enacted in 2004, the Human Tissue Act, forbids the unauthorized collection of samples for DNA testing (e.g. cells, hair, and many more) for DNA examination. The only exceptions at this stage are for criminal and medical investigations.
The Unites states Department of Health has also created a Code of Practice, in which it has dictated a set of guidelines for the conduction of paternity tests. They are fairly broad but mostly address issues of consent in DNA paternity tests, with a view to maintain the best interests of the child and parents involved. Consent issues can only normally be overridden by a court order.
Issues of DNA Testing Privacy
The Act however is not a complete solution. For your own piece of mind you should query the laboratory where your tests will be analyzed and most importantly, where your data and physical sample is stored. If it is a reputable firm you should feel comfortable that your privacy is being protected.
While not normally a concern when taking a paternity test, a possible consideration is that once you have parted with your DNA sample, it is possible for it to be tested at a future date for other reasons, such as health concerns. What if from this test, it is discovered that you are at risk for developing a genetic disorder? An unscrupulous company or person could use that information against you. A hypothetical example could be that if an employer knew that a member of staff was likely to be diagnosed with a disease at some point in the future, then the employer may not wish to retain or promote that person. Likewise, those considered to have a high genetic risk after DNA testing, face the possibility of problems with obtaining insurance because they are more likely to generate higher medical bills that would impact the insurance company’s profits. While you can control your lifestyle, you have no power over the content of your genes, and thus it is unfair to discriminate based on the results of a DNA test. Apart from the human tissue act we mention earlier, the USA also has the Health Insurance Portability and Accountability Act of 1996, which was the first federal law to address genetic discrimination. The scope of the act however was not broad enough insurance companies were still able to charge higher rates based on genetic data. Furthermore insurance companies were also still able to actively collect genetic information and occasionally requiring applicants to take a DNA test. These loopholes were fortunately closed in 2008 with the passing of the Genetic Information Nondiscrimination Act.
Paternity Testing and other DNA testing wrap up
The choice to take any type of genetic test is a very personal decision. The best security you can enact now is to be informed. Ask any company you are considering using for a DNA test the questions above BEFORE you sign up or send them your samples. If they don’t answer, or don’t answer to your satisfaction, don’t feel compelled to use their services. Paternity testing and other types of DNA examination companies are expanding rapidly and you will still have plenty of other companies to choose from after excluding the ones you don’t feel comfortable with.