There are risks and causes for concern with every new industry and technological advancement. Home DNA test kits like 23andMe and AncestryDNA are no different.
Privacy concerns may comprise most of the issues that bother people when they consider taking a DNA test, but other apprehensions seem equally well-founded, such as the accuracy of the data. While there are a lot of potential benefits from the data you’d receive back, it’s important to know both sides of the equation before ordering a kit.
Main areas of concern include:
- Commercialization & Data Ownership
- Use in Law Enforcement
- Data Security Breaches
- Data Inaccuracies
- Emotional Scarring
- Process for Data Deletion
A person’s DNA contains some of the most highly private information, and the labs that receive it have access to it for the tests and beyond. When users mail in their personal genome information, they voluntarily share their DNA.
A genetic researcher at the University of Oxford notes that DNA lasts for centuries. Once sequenced and stored, DNA data becomes permanent and allows no way to change it.
Commercialization & Data Ownership
Abuse of privacy can occur when the use of DNA information and the profit from it belong to anyone other than the person who provided it.
Relinquished Control of Data. Anyone who likes to think that they have control over their lives may have to revise their thinking if they use a DNA test kit. The customer’s data becomes the product that DNA companies may use at will. Each genetic code has a unique value, but customers have no control over who gets to use it. The default agreement that allows consumers to use AncestryDNA requires them to provide permission for the company to transfer genetic data to other entities. By agreeing to the terms, a consumer allows DNA companies to share the data and use it, royalty-free, for product development, research and other purposes that may benefit them.
Use in Pharmaceutical Research. Customers may not like the idea of providing science for DNA companies to use at no charge, but lucrative deals indicate that they do use it. CNBC reported that more than 80 percent of the customers who buy the 23andMe test kit agree to let the company share DNA test results with its research partners, which lead to a $300 million deal with GlaxoSmithKline PLC in 2018 for their “aggregate customer data”. Additionally, Ancestry.com has a primary research partnership with Alphabet, Google’s parent company, who owns Calico Life Sciences.
A spirit of altruism may encourage some consumers to submit a DNA sample in the hope that the information may help advance medical science by finding a cause or a cure for a disease. But by doing so, they’re helping to unlock medical secrets that further enrich the same kinds of companies that set exorbitant prices on new drugs. At the very least, consumers should be aware that their genetic information is valuable enough to not give away for free.
Long-term Security & Scope. The information that consumers submit to DNA companies may change hands when they go out of business, change business models or decide to sell. Companies that buy existing databases may not honor the commitments that previous owners provided. Regulation of DNA databases may vary by country, and some companies claim to retain samples for up to 10 years. DNA samples that customers submit in countries around the world may become part of a global database.
Use in Law Enforcement
One of the biggest privacy concerns with DNA testing companies is the sharing of genetic information with law enforcement.
In recent news, FamilyTreeDNA started working with law enforcement agencies to track criminals. While the average person buys a kit because they just want to learn more about their ancestry and find their relatives, the Federal Bureau of Investigation (FBI) is using the data, which consumers paid for, to solve criminal cases that could result in the convictions of those same consumers & their family members.
Wrong Imprisonment. Officials in Las Vegas expressed regret over an error that caused an innocent man to spend almost four years in a Nevada prison. The inaccurate evaluation occurred when a crime lab accidentally mistook his sample for that of another suspect. Believing the advice that a jury may accept DNA evidence as a more reliable source than his testimony, he decided to plead guilty to lesser charges. The lack of accuracy was no laughing matter of a mistaken sample from a dog or a wrong identification in a mock crime. It made an innocent person spend time in prison until the crime lab found the mistake and apologized. The study revealed an enormous discrepancy among the 108 labs that participated in it. The statistics for the analysis of the same evidence had a variation of more than 100 trillionfold, a number that may represent the difference between pocket change and the federal tax receipts in the United States. Test results matter immensely when juries use them to render judgments on whether a DNA match amounts to more than a coincidence.
Data Security Breaches
While customers may regard DNA samples as precious and proprietary, the companies that process them may respect them a little less. Third-party sharing allows access to DNA data by interested entities and makes it vulnerable to cyber theft. The capability to hack genes exists, and scientists believe that some disreputable computer experts can place malware in DNA to compromise the security of computers where databases reside.
Additional Privacy Concerns
Beyond those major 3 areas of privacy concerns, there are various others worth considering.
Anonymity of Sperm/Egg Donations. Sperm and egg donations may diminish as the identity of donors becomes more likely. As the number of participants in DNA testing increases, it may dissuade donors who prefer to remain anonymous. Families who want or need access to the donated sperm or egg inventory may experience negative effects.
Potential for Discrimination. GINA prevents health insurers and employers in the United States from discriminating against job applicants or employees based on DNA. It specifically disallows health insurers from factoring in genetic data about insurance eligibility or the price of premiums. However, legal protections do not apply to disability or life insurance providers.
Loss of Non-Consenting Family Member’s Anonymity. The decision to use a DNA test may require approval by a user’s family as a courtesy. By placing uniquely personal samples under the control of commercial companies, customers can jeopardize family anonymity. Science has no way to maintain the anonymity of test data even when the users try to mask their name or location. Each DNA creates a unique marker of identity that cannot change, but it may allow mishandling by irresponsible parties.
The accuracy that users expect may not exist in the results that DNA test kits produce.
- One company classified a dog’s DNA sample in 2018 as belonging to a person.
- A comparison of samples that the National Institute of Standards and Technology (NIST) submitted to 105 crime labs in America and three in Canada in a mock test produced stunningly incorrect results.
- The New York Times reported that the NIST test found that almost three-quarters of the labs pointed to the guilt of an innocent person in the mock event that harmed no one.
The lack of accuracy presents a troubling indicator that errors may occur in actual casework.
Misrepresented Health Issues. People who use DNA tests may make questionable health decisions based on the results. Those who wonder about the likelihood of contracting various diseases may not know how to handle the information. Some scientists question the reliability that manufacturers claim, but users must cope with the findings in any case.
Limited Applications. The usefulness of DNA analysis may disappoint users who hope to achieve a specific goal. Heritage tests show more precision for people who have European roots and less for people from other geographic areas. DNA analysis depends on comparing samples to others on file. Statistics show that more people who have European roots have taken the test, creating a database that assesses where ancestors live more precisely than others from areas outside of Europe.
While DNA tests have provided heartwarming stories of reunited families or best friends who found out about a genetic connection, they also have resulted in findings that can cause serious emotional scarring through the exposure of family secrets that were purposefully hidden or not.
For example, if you know that your parents or siblings have participated in the program, you may be floored to discover that some or none of those individuals are genetically related to you. On the other hand, you may discover that you have one, several or even hundreds of direct relatives that you were not aware of. As a result, it’s important to be mentally & emotionally prepared for any number of possible findings.
Process for Data Deletion
The Internet Health Report notes that consumers who regret taking the test can request the deletion of the data and the destruction of the DNA sample. However, companies may or may not comply, and customers have no way to know of any action that an organization takes. The General Data Protection Regulation in Europe provides some protections, but most people who hand over sensitive data have no rights over it.
Warnings to Consumers. The Federal Trade Commission warned consumers about the privacy implications that they may encounter with at-home DNA test kits. At the same time, it advised them to “comparison shop” among sellers and to evaluate each company’s security settings.
Exclusions. Privacy experts express concerns that GINA, the only law that currently addresses the privacy of genetic data, focuses too narrowly on banning access to data by employers or insurance companies. Some groups who receive insurance through certain government programs do not get protection under GINA. Some of them do, however, have internal policies that prohibit genetic discrimination.
Legislative Action. With some strong statements that provide straightforward requirements for the DNA testing industry, Alaska’s Genetic Privacy Act may set an example for other states to follow. The statute protects consumers by making DNA test kit companies require “written informed consent for the collection, analysis, retention or disclosure” of the samples that they submit. Clarifying the ownership of the DNA material, the statute makes clear that the samples and genomic analyses belong exclusively to the “person sampled or analyzed.”
Deletion Process at 23andMe. The 23andMe website asks if customers want to have their saliva sample saved or discarded. However, it does not ask the same question about the DNA itself. On the site’s “Customer Care” page, an option under “Accounts and Registration” allows customers to select “Requesting Account Closure” where they can submit a request to destroy their sample.
Deletion Process at Ancestry. On the Ancestry website, the navigation bar on the homepage displays “DNA” that customers need to select to initiate the deletion process. From that point, customers see a page with their name on the top. Scrolling to the upper right area allows them to select “Settings” and then “Delete Test Results” when it appears in the column on the right. The company agrees to delete all genetic information within 30 days of the request. However, customers who agreed to “Consent to Research” must allow the company to continue using their data in “active or completed research projects.” Ancestry requires customers to call “Member Services” to request them to destroy a sample.
Overall, there are a lot more unknowns than knowns in the risk category of genetic testing & the usage of the data it provides.
The loss of anonymity creates concerns about identification that can lead to problems, and test-takers may object to the loss of control that can happen with a voluntary contribution of a DNA sample. Mistaken identity has sent people to jail, and personal information often becomes the property of research companies. Anyone who had concerns about the invasion of user privacy that caused Facebook to receive a reported $5 billion fine may worry even more about the privacy implications of taking a DNA test. Numerous federal laws address test issues, but consumers still face major areas of concern from using DNA tests.
There are other options to getting the data you want without a lot of the possible risks, though. Consumers who want to avoid commercial providers may choose to send their samples to All of Us at the National Institutes of Health, a nonprofit research repository that allows public scrutiny of data.