Genetic Data Privacy

It’s a scary thought, but somebody may be manipulating your genetic data for malicious purposes right now. It may sound like science fiction, but it’s simply a more advanced form of identity theft.

The reality of genetic data misuse is still relatively new, and lawmakers are scrambling to pass consumer data privacy protections. Meanwhile, DNA and other genetic data may be stored improperly by various companies and potentially compromised, leading to various risks and new litigation.

The Lyon Firm is actively investigating genetic data privacy violations and other forms of personal data theft on behalf of plaintiffs nationwide. Data breach incidents and identity theft can leave individuals vulnerable now and in the future, and legal action may be necessary.

Genetics & DNA Privacy Violations

Your genetic code is considered part of your personal protected health information, and should be treated as such by health providers and DNA testing companies. There have been recent concerns about sending DNA samples to genetic testing agencies who may be sharing your genetic data with researchers, law enforcement, or even criminals.

It is now big business–sending out saliva samples to genetic testing companies such as 23andMe and Ancestry–to learn more about ancestry and personal health. But the privacy of DNA tests are poorly understood. Most individuals, in fact, don’t understand the risks of a DNA test and the importance of genetic privacy.

Because there is a lack of DNA data protection for consumers, companies have been writing their own privacy policies that don’t necessarily protect the consumer from genetic privacy violations.

DNA Data Protection

The Genetic Information Nondiscrimination Act (GINA) prevents employers from discriminating against individuals based on genetics. But the law does not regulate third-party companies and how private entities can collect, store and sell genetic data. It may be possible to have your DNA test results and genetic information deleted by 23andMe and other sites, but the data may have already been leaked for millions of consumers.

The companies that provide DNA testing services have had control over a consumer’s genetic information for years without oversight. Genetic testing companies may use your personal information internally or sell the information to outside researchers without additional consumer consent. The storage alone of genetic data can be problematic in the increasingly likely event of a data breach.

MyHeritage was hacked in 2018, and while DNA data was not stolen, the threat leaves consumer safety advocates wary of genetic privacy protections.

Consumer safety attorneys are taking on new class action data privacy violation cases every day. While companies collect, store, share, and sell your personal data, consumers often see their privacy compromised.

Personal data security may take a backseat to company profit and growth, and instances of data misuse are increasingly common. There are many new questions surrounding what companies can legally do with data they collect from their clients, but only a handful of states have actually signed consumer data privacy protections into law.

Personal data privacy violations can be the basis for class action data misuse lawsuits, and The Lyon Firm aims to protect consumer privacy rights. If you have been the target of data theft, personal data misuse or data privacy violations, call for a free consultation. You may be eligible to join existing data privacy class actions and compensation may be available.

Personal Data Privacy

Companies often take advantage of consumers by presenting a long, unreadable privacy policy on websites and apps. The end result is consumers signing away their personal data for nothing in return, except to use a website or media platform. Opting out of data collection may be difficult or impossible in some cases.

Not only is personal data collected and sold by certain companies for profit, but it is not always properly secured, and data breaches lead to data theft and a host of data privacy violations. Cyber security lawsuits are a growing trend in the legal world, and personal data privacy class actions may be necessary to hold companies accountable for instances of data misuse and data theft.

There are many ways in which personal data can be leaked, stolen or misused by third parties. Data breaches can be very costly to everyone involved, and legal action may be a logical course of action.

Consumer Data Privacy Laws

As of 2021, there is no federal legislation in the United States that addresses consumers’ data privacy concerns. There are laws such as HIPPA (personal health privacy), Gramm-Leach-Bliley (financial privacy), and COPPA (children’s online privacy) that establish industry-specific standards, but nothing that encompasses the full scope of online privacy matters.

There are, however, some state laws that may be the model for future federal data collection regulations, including personal data privacy and cybersecurity regulations in California, Illinois and Virginia.

The Biometric Information Privacy Act (BIPA) is one of the most modern examples of state legislation intended to regulate companies’ use of biometric data. Some of the more important provisions of the privacy law include:

• Requirements for companies to seek informed consent prior to collecting personal biometric data
• A limitation of rights to sell or disclose collected biometric data
• A requirement for companies to create confidentiality and data retention guidelines
• A prohibition of profiting from collected biometric data
• The right of legal action for individuals affected by data theft violations
• Enacting damages from $1,000 to $5,000 per negligent or reckless violation.

Not only do some states regulate a business’s use of biometric data, but they allow for individuals to bring legal action against companies that violate state biometric data laws. In January 2019, the Illinois Supreme Court ruled that private individuals can file data theft claims if they are able to show that their privacy rights have been violated.

The Illinois statute prohibits an entity from collecting biometric information unless it fulfills the following:

• Informs individuals in writing that their biometric data is being captured
• Outlines the purpose and period of time for which the data will be utilized
• Receives a written release from individuals consenting to the data collection

Other states have been scrambling to catch up with modern advances and have been slow to provide biometric policies.

DNA Collection Laws

Florida has passed a law governing the collection of DNA samples, which places restrictions on the use, retention, and sharing of DNA. Legal requirements linked to “DNA samples” include any human biological specific from which DNA can be extracted.

The law dictates that in order to process an individual’s DNA, entities must obtain express consent, as well as a clear and prominent disclosure describing the manner of collection, use, retention, maintenance, or disclosure of the DNA sample. The notice must also outline the purpose of processing or the use for the DNA sample. The DNA collection Act creates liability for failure to obtain express consent.

For use in a criminal investigation, or if complying with a court order, there are exceptions. Other wise, companies that collect DNA samples must ensure they meet the requirements of the DNA collection law. Many other states are continuing to impose new restrictions on the processing of biometric and genetic data.

DNA Data Privacy & Genetic Data Identity Theft

If your biometrics or genetic data are stolen, some savvy fraudsters may be able to wreak havoc in your life. Your genetic code and your biometric information are set in stone, so to speak, and cannot be changed like your credit card number or site passwords. The manners in which this kind of data can be manipulated is still largely unknown, but it is certain that individuals must have consumer protections in place.

Data privacy experts say genetic information could be used in medical identity theft and insurance fraud schemes. Genetic information could also be used against individuals in a court case, where DNA is found at a crime scene. Law enforcement agencies have already been using genetic data to identify suspects.

The bottom line is that consumers must have complete control over their genetic data with few exceptions. In the very least, companies should have your written consent before collecting, storing and distributing your DNA.

Genetic Data Sharing Laws & Privacy Protections

In 2008, the Genetic Nondiscrimination Act was passed. The GINA prevents health insurers from denying coverage or raising prices based on genetic predisposition to certain health conditions. The GINA was insightful for the time, but more legislation is needed to protect the consumer.

Since there has not been a federal law that properly encompasses genetic data theft concerns, some states have been leading the charge.

The Genetic Information Privacy Act (GIPA), and other state statues supplement existing federal and state laws governing genetic information:

• Entities who engage in the collection of genetic data (any data that results from an analysis of a biological sample or an equivalent element from a consumer that concerns genetic material–including DNA, RNA, genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, and SNPs) must provide consumers with a complete summary of its genetic data privacy practices.
• By law, consumers must have access to information regarding the company’s use, maintenance, and disclosure of genetic data. Companies must display a privacy notice which outlines information about the company’s data collection, consent, use, access, disclosure, maintenance, transfer, security, and retention and deletion practices.
• Under GIPA, companies must get express consent for the collection, use, and disclosure of genetic data. Separate consent must be obtained for the storage of a biological sample after initial testing, use of genetic data beyond the primary purpose of the testing, or transfer of genetic data to a third party.
• Companies who collect and store DNA and genetic data must implement and maintain reasonable security practices designed to protect a consumer’s genetic data.
• Under GIPA, individuals must be able to delete their account or genetic data, and destroy biological samples. Much of the new legislation is aimed at limiting the sharing of genetic data with insurers and employers and requiring consent before genetic data can be shared with any third parties.

How do Companies Handle Genetic Data?

Companies and healthcare providers may share customer data on an opt-in basis, and around 80 percent of 23andMe customers agree to participate. Do consumers know what this means, however? 23andMe is a valuable resource in the work of collecting genetic information, but the privacy risks remain.

Testing companies share data only with explicit consent but other companies allow anyone to upload genetic information to search for relatives. Sharing one individual’s data is opt-in, but what about your family? There is no system in place to protect the genetic privacy of relatives. This is one step on a dangerous path, especially when there have been calls for national forensic DNA databases that may store data for all citizens.

The risk of data theft following data breach events is rising rapidly, with more and more data breach incidents every year. No type of personal information is spared, and DNA privacy is more important now than ever.

DNA Collection & Data Privacy Lawsuits

Unfortunately, protecting your personal data is not a primary concern for most hospitals or companies, which is why some accountability is necessary. When faced with lawsuits, companies are much more likely to comply with consumer rights.

Genetic data privacy is more important than many believe, and in order to prevent cases of data theft and identity theft, more litigation is necessary. Criminals are now able to use small amounts of personal data for large gains. These damages can be substantial and long-lasting. Genetic data theft may prevent consumers from accessing banks loans, education, housing, and health insurance.

The benefits of genetic testing privacy and DNA collection regulation is obvious, but the public needs to put more pressure on companies who store their genetic and biometric information to ensure their privacy rights.

To learn more about data privacy law and current litigation, contact the Lyon Firm for a free and confidential case review. Joe Lyon takes pride in fighting for consumer rights, and holds companies accountable when their negligence causes financial losses and other damages.