Genetic Tests and Your Privacy
Deoxyribonucleic acid or DNA for short is the foundation of all forms of life that exist on our planet today. It is a molecule that consists of polynucleotide chains that form a double helix and carries genetic instruction. The instructions include information for the development, functioning, growth, and reproduction of all organisms and most viruses found on earth.
There are four significant varieties of macromolecules necessary for life: nucleic acids, proteins, lipids, and complex carbohydrates. Using the information found inside DNA, individuals can now send off to get detailed information regarding their health and genetics. It can be used in healthcare to diagnose or rule out genetic disorders. It can also be used to predict future health conditions or customize medical treatments. Genetic testing can be used to determine biological relationships, such as a paternity test to determine parentage.
While once only available through health care providers, DNA testing is now so commonplace that at-home tests are regularly advertised on television. The ads promote genetic testing to discover your ancestral history and health testing to find and predict medical issues. It may be a great family history lesson to learn that you have both Native American, French and Greek heritage. It can make it a great way to discuss family history with children and get them interested in geography.
DNA testing may have its benefits, but the question might need to be, “What’s being done with the data?” We consider our health information to be personal. It is against the law to release it to prevent discrimination or other negative consequences. When we allow our DNA testing, it can show current health conditions and future health conditions.
Suppose this data is given to the wrong party, such as life or health insurers. In that case, there is the possibility to face discrimination based on the chance that a health condition will develop that may be currently unknown. When participating in getting genetic testing, the subject of data privacy must also be considered.
Database Storage of Results
A DNA database contains DNA profiles. These profiles can be analyzed, studied, and used in science, genetic diseases, genetic fingerprinting for crime-solving, or genetic genealogy. These databases may be public or private. The federal government owns the largest DNA database.
Before getting a DNA test, you should stop and ask yourself where your results are going, find out if the results will be stored, and to which third parties the data is given. Consider the risks to both your privacy and to all those in your family.
There is a great deal of criticism on the use of DNA databases. These privacy advocates believe that the use of this type of technology poses a threat to individual civil liberties. Some believe that maintaining the database, even with users’ informed consent, can be used for discriminatory profiling in the stored data.
Critics warn that the stored genetic data being sold to third parties could contain details that other corporations and governments could use to discriminate or treat unfairly. Forcing DNA testing may constitute an invasion of privacy, and there are movements underway to limit the collection legally. When law enforcement does genetic profiling on a suspect, does their genetic information define them as “criminal?” Of those who are falsely accused or found not guilty, the continued storage of the genetic material and data within the database can lead to having a “criminal” record for life.
Individually, some fear a data breach of this intensely personal data, leading to lifelong repercussions. There is also the worry that law enforcement, employers, and even insurance companies could use the information in a discriminatory manner.
Who Has Access?
Should we worry about who has access? Yes. It has been noted that the majority of commercial DNA testing companies sell their data to third parties. While it can be a fantastic discovery and help families learn about their heritage, those who jump in excited over TV commercials may not realize that their data will be stored or shared.
At-home DNA testing is becoming widely available and soaring in popularity. The test is considered a novelty, but the data is the most personal data stored about an individual. Now mainstream, there are more than 50 DNA-testing kit services available on the market. Other details that may also demonstrate the impact of these tests:
- MIT Technology Review has predicted that more than 100 million people may use commercial genetic testing in the next two years. Their data will be added to these national databases.
- Even though millions are aware of the controversies of internet companies’ collection of personal data, they are readily signing up to give their most unique piece of data over to an unregulated industry.
The amount of data and number of participants could be staggering. However, these companies are regularly selling or sharing data with others. It was uncovered in 2019 that FamilyTreeDNA was voluntarily giving the FBI regular access to its database, which included information on over one million users. Agents were comparing DNA samples from crime scenes to genetic data in their database.
Big Pharma is now trying to get access to the data. Ancestry.com and 23andMe have both shared anonymized data with researchers and other companies. Together their databases are comprised of more than 15 million individuals.
How to Protect Your Data
Despite knowing that your most unique piece of identification could be sold or put into a national database, your mom, the kids, or perhaps a significant other is very interested in genealogy. They want to get this test done. How can you participate in learning about your DNA and still protect your data?
Home DNA kits generally involve sending in a saliva sample or perhaps a cheek swab. Talk with your family before sending in samples because this is the most personal information you can share. Your sample contains details of your family members’ genetic code. Realize that it is not just about you. Once entered into the database, it can locate relatives and map out your entire family tree. Still, understanding where your data is going and details about what will be done with the data should be clearly known before sharing; once your unique information is in someone else’s hands, it could be difficult to track it.
The first step is to see if you can get the testing done through medical means. There are protections in place for your medical data, through HIPAA, that will maintain your privacy. If a doctor takes the sample, it is protected by the Health Insurance Portability and Accountability Act. There are no guarantees when going the commercial route.
According to Dr. James Hazel, a postdoctoral fellow at the Center for Genetic Privacy and Identity in Community Settings, “In the United States, if you’re talking about genetic data that’s generated outside of the health care setting, there’s a relatively low baseline of protection. And that’s provided generally by the Federal Trade Commission. So, the Federal Trade Commission, although it’s not specific to genetic data, can police unfair and deceptive business practices across all industries. Other than that, there are no laws in the United States that apply specifically.”
You still want to go through with it, so how can you protect your data? The first thing you will need to do is read the privacy policies thoroughly for the different testing companies you have in mind. Go big. It is usually the larger companies that even have protections in their privacy policies. These policies will explain what data is collected, how it is used, and what controls are available to you to remove your information or opt-out.
Find the options that allow you to opt-out of being added to their database. If a company violates its given privacy policies, it can be held accountable by the Federal Trade Commission. The three biggest DNA testing companies are 23andMe, Ancestry.com, and MyHeritage. All three of these companies have an opt-out option in their privacy policies.
Read carefully, considering the various options that come with sharing your data. Some companies may allow you to share your data for research purposes, but only after being anonymized. This means they strip out all of your identifying information such as name or birthdate and only share the actual DNA profile. This is not a guarantee that your data will be protected. DNA companies will also ask about storing your DNA sample for future testing to improve in the future.
Many will also allow you to opt in to be contacted if another individual finds that you are a match or relative. Consider these options carefully. If you feel that your contribution to science is essential, you may not care about sharing your data with research companies. Understand, though, that once your data is shared, there is no way to ‘opt-out’ or remove your data. You will also no longer have control over if the other party shares the data beyond their use. As for resulting possible relative matches, how do you feel about others contacting you? If you’re not sure, perhaps use an email address as a point of contact.
Remember that participation in genetic testing should be done with caution. When discussing it with family members, make sure they, too, understand the privacy issues involved. Be sure to take the steps necessary to protect your data if you and your family choose to continue getting tested. Opt-out. Don’t permit to be involved in a government or corporate database. As for other options, consider each one carefully before you check ‘Agree.’