Think Twice Before Sharing Your Genetic Information
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Chapter 1: The Value of Your Genome
Do companies have the right to access your genetic information? In the United States, the National Institutes of Health (NIH) is actively seeking your genomic data through its All of Us initiative, which aims to gather the medical information, including genetic material, of one million Americans. This data will be utilized by researchers to discover new drugs and find cures for prevalent diseases such as cancer and heart conditions.
The NIH enforces stringent privacy measures for this data. Researchers must apply for access, and if granted, they receive only de-identified data that lacks personal identifiers, which must then be securely stored on protected servers. While these restrictions may seem tedious, they are designed to safeguard your privacy. Some scientists argue, however, that all data should be made openly accessible, claiming that people are often willing to share extensive information on social platforms like Facebook in exchange for useful applications. Wouldn’t the public also be inclined to share their genetic information for the advancement of medical research?
The first video titled "Shared DNA Matches - the only DNA Tool You will Ever Need" discusses the importance of managing genetic data effectively for personal and scientific use.
Section 1.1: Growing Concerns About Data Sharing
The topic of data sharing — what to share, when, and how much — has become increasingly pertinent in recent years. The 2017 Equifax breach exposed the personal information of over 143 million Americans. Moreover, it was recently revealed that Facebook allows users to be searchable by phone number, and opting out isn’t an option if you’re using two-factor authentication. Additionally, an outdated Android TV app enabled users to view all photos uploaded to Google Photos, regardless of privacy settings.
Information is valuable. Personal details like home addresses and Social Security numbers can lead to identity theft, unauthorized credit accounts, and more. Even seemingly harmless shared photos can inadvertently reveal your location or personal belongings, raising concerns about privacy and safety.
But what about genetic data? More Americans are mailing their saliva samples for DNA tests than ever before. Companies such as Ancestry.com and 23andMe have sold millions of genetic testing kits. By sending in a sample, these companies analyze your DNA at numerous locations to provide insights about your ancestry.
Section 1.2: The Rise of Genetic Testing
These tests are immensely popular. For instance, during the Thanksgiving weekend of 2017, Ancestry reported selling over 1.5 million genetic testing kits. 23andMe offers researchers access to a cohort of more than 5 million samples — for a fee. This is where the true value of genetic testing companies lies; it’s not merely in selling kits for $100, but in the vast data they accumulate.
Similar to the NIH, these firms assert that shared genetic data is anonymized, with personal identifiers removed. While they require applications for data access, individuals can still upload their genetic information to other platforms, like GEDmatch, which has limited privacy safeguards. This practice has even assisted law enforcement in solving high-profile cases, such as catching the Golden State Killer.
Chapter 2: Weighing the Risks of Sharing
Even if you’re not involved in criminal activities, it’s crucial to ponder the potential risks of using these services or advocating for unrestricted sharing of genetic data. Although your genome might not be as immediately valuable as your credit card information, it still carries risks. A hacker can't use your genome to open a fraudulent account, and thanks to the Genetic Information Nondiscrimination Act (GINA) of 2008, health insurers cannot use genetic data to adjust your premiums.
Nevertheless, it’s essential to recognize that GINA's protections don't extend to life or disability insurance, with bills proposed to prevent such companies from using genetic information still pending approval. While the NIH asserts that shared data will be “de-identified,” research indicates that it’s surprisingly easy to re-identify individuals using genetic information when cross-referenced with other datasets, such as voter or census records.
Your Genome’s Value and the Importance of Privacy
The All of Us project from the NIH will undoubtedly yield an invaluable dataset for research. While the rigorous application process may slow down medical progress, it’s crucial to maintain privacy restrictions. Unlike easily changeable personal information, a genome is immutable; once it’s publicly accessible, it cannot be retracted.
The second video titled "momondo – The DNA Journey" explores the personal stories and implications of genetic sharing, emphasizing the emotional and ethical dimensions involved.