DNA, the genetic code that lays the foundation for a person’s health, mental abilities, and personality traits, is a fundamental building block of a person’s identity. The assortment of As, Ts, Gs, and Cs tells a unique story, and an analysis of a person’s genome can predict much about them. If health is tantamount to happiness, this genetic information—and the ability to decode it—is a sort of modern counterpart to tea leaves and oracles. Given the sensitivity of this information, it’s reasonable to assume that it is kept private. But this is not the case. In fact, genetic testing companies often sell data to third-party organizations without consumers’ informed consent. Although the sale of genetic data has many potential benefits, these benefits come with grave ethical concerns. Without proper regulations and increased public awareness, the processing, sale, and analysis of genetic data may do more harm than good.
Users of genetic testing platforms often unknowingly consent to sharing their data with outside research organizations. In the case of 23andMe, a leading genetic testing company, more than 80 percent of customers have decided to share their data for research. Though different companies offer varying levels of transparency in their privacy agreements, users are often unaware of exactly how their genetic data is being used and the potential security risks involved. Consumers who do not have the time or knowledge to decipher complex privacy policies are unlikely to understand the full details of the data-sharing process.
The primary force driving the sale of genetic data is its value to pharmaceutical research. When pharmaceutical companies have access to large collections of genetic data, they can more effectively determine whether a particular drug target is involved in the development of the condition in question. This significantly reduces the cost of research, development, and clinical trials. It’s no surprise, then, that drug developer GlaxoSmithKline invested $300 million in 23andMe in exchange for exclusive drug development rights. But while biopharmaceutical advancements may benefit society at large, consumers have argued that they should be compensated financially, especially since their genes play an integral role in developing these new drugs.
Genetic data can help pharmaceutical companies develop new drugs, but for average consumers, allowing companies to access genetic data may lead to additional financial strains. Although legislation currently exists to prevent health insurance companies from exploiting a patient’s genome, the law is not entirely straightforward. As stipulated by the Genetic Information Nondiscrimination Act (GINA), “employers and health insurance providers cannot discriminate against Americans based on genetic information.” The law therefore dictates that health insurance companies cannot change a patient’s coverage or costs because they are genetically predisposed to certain conditions. However, if a patient exhibits symptoms that arise from an underlying genetic cause, health insurance coverage may be altered. Additionally, GINA does not extend to life, disability, or long-term care insurance, meaning that many Americans may experience financial burdens as a result of genetic testing, even if their healthcare insurance costs are not directly affected.
The use of genetic information by law enforcement also raises a number of privacy concerns. Since genetic information is shared among family members, an individual can be identified using samples from a distant relative. A variety of cold cases, such as that of the Golden State Killer, have been resolved using this method, and law enforcement needs the DNA of only two percent of the population for almost every individual to be identified. Given that genetic testing companies like FamilyTreeDNA have allowed law enforcement agencies such as the FBI to access their genetic libraries without a subpoena, nearly every individual may soon be identifiable using available DNA. Allowing law enforcement to become more effective is a good thing; however, doing so without proper regard to citizens’ privacy leaves open dangerous doors of distrust and abuse.
The lack of comprehensive legislation protecting genetic data leaves a slew of disconcerting ambiguities. Historically, legislation has failed to address privacy concerns regarding the use of such data. For instance, the 21st Century Cures Act of 2016 prohibits the sharing of genetic data of participants in federal research studies but does not extend to participants in studies conducted by private organizations. The Health Insurance Portability and Accountability Act (HIPAA) fails to provide adequate protection, as it does not prevent law enforcement from accessing genetic information that patients add to their electronic health records. In addition, government regulations have failed to address the storage of genetic data, and in June 2018, the genetic data of more than 92 million users from MyHeritage was found on a private server after a major data breach. Furthermore, there is no protocol to protect users in the event that companies storing their data go out of business or are otherwise compromised.
It’s clear that our current laws are lacking. As companies such as 23andMe become increasingly mainstream, it’s imperative that lawmakers match the pace of biotech advancements. Given the dizzying pace of genomic research, researchers may soon be able to predict qualities such as educational attainment, which could very well lead to a slippery slope of discriminatory practices.
To prevent this, legislators must define clearer regulations and penalties for the processing, analysis, and sale of genetic information. The most comprehensive statewide solution is an amendment to GINA signed into law by California Governor Jerry Brown in 2011, which prevents genetic discrimination in housing, mortgage lending, employment, education, and public accommodations. A national incorporation of this amendment would certainly be a step in the right direction.
Given that the process of passing legislation in Congress is slow and often gridlocked, change must come from another front. Consumers must begin to educate themselves about the potential privacy risks associated with using genetic testing services, and companies need to write consent forms in layman’s terms, not extra-fine print. By identifying the companies that engage in shady data sharing, users could make more informed decisions about whether or not to seek genetic testing. Increased public awareness will help hold companies accountable as local and state governments pass more comprehensive legislation.
The sale of genetic data has the potential to create a safer and healthier America, but that future is still a distant one. In order to protect consumer privacy and prevent discriminatory practices, there must be an active response from government officials as well as responsible, informed decision-making by consumers. Only then will society be able to reap the full rewards of the past century of advancements in genetics without the fear of potential backlash.
Infographic by Minji Koo ’20, data by Emilia Ruzicka ’21