# data[].attributes.body
Genetic data governance refers to how genetic information is collected, stored, accessed, shared, and protected. As services like 23andMe and AncestryDNA become increasingly popular, millions of individuals are submitting their DNA without realizing the long-term implications. Unlike traditional health records, genetic data is deeply personal and permanent—it can reveal not only information about your health, but also that of your relatives. Despite this, there are no comprehensive laws in place in the U.S. to ensure that genetic data is managed ethically and securely. This lack of oversight raises critical concerns about privacy, consent, and data ownership.

# data[].attributes.attachment_link.title
You Should Be Worried About Your DNA Privacy

# data[].attributes.headline
The Problem with Today’s Genetic Testing Market

# data[].attributes.subject
The Problem with Today’s Genetic Testing Market

# data[].attributes.body
While genetic testing offers personal insights and medical promise, the direct-to-consumer (DTC) genetic testing market is underregulated. Most companies provide lengthy, vague consent forms that few people read or fully understand. These agreements often give companies permission to sell or share genetic data with third parties, including pharmaceutical companies or even law enforcement. Consumers may assume their data is protected like regular medical information—but that’s not the case. Current laws like HIPAA don’t apply to DTC companies, and this gap leaves people exposed to risks they never anticipated

# data[].attributes.body
Genetic data governance affects a wide range of stakeholders:

Consumers often lack awareness about how their data might be reused, sold, or accessed by others. They may not understand that genetic data can impact them or their relatives for a lifetime.

Genetic Testing Companies collect and sometimes sell data for profit. Their terms of service often prioritize business interests over user privacy.

Federal Regulators like the FDA, FTC, and HHS are involved, but no single agency has full authority over DTC genetic data, leading to weak enforcement.

Privacy Advocates call for stronger consumer protections, arguing that genetic data deserves the same safeguards as electronic health records.

Researchers and Pharmaceutical Firms want access to large genetic datasets for developing drugs and treatments. This raises ethical questions about consent, compensation, and data fairness.

Law Enforcement has increasingly used DTC databases to investigate crimes, even when individuals didn’t consent to this use.

# data[].attributes.body
There are four major issues with current genetic data governance:

1. Lack of Comprehensive Laws: HIPAA and GINA don’t apply to most DTC genetic services. This leaves a legal vacuum around privacy, discrimination, and consumer rights.

2. Weak Consent Practices: Consent forms are long, legalistic, and not user-friendly. Most people agree without understanding how their data may be sold or shared.

3. Re-identification Risks: Even anonymized genetic data can be traced back to individuals using other public data, such as genealogy websites or social media.

4. Bias and Underrepresentation: Most genetic datasets are overwhelmingly white and Western. This creates bias in medical research and perpetuates health disparities in underrepresented groups.

# data[].attributes.body
Option 1: Create a Comprehensive Federal Law
This would establish clear rules for consent, data sharing, storage, and enforcement. It would cover all DTC companies and give consumers control over their own genetic information.

Option 2: Expand HIPAA to Include DTC Testing Companies
Updating HIPAA would extend its existing privacy protections to consumer genetic data, aligning it with standards used in clinical settings.

Option 3: Voluntary Privacy Certification Program
A government-backed label could reward companies that follow strong privacy guidelines, allowing consumers to make informed choices.

# data[].attributes.body
After comparing all three options, the most effective and lasting solution is the creation of a comprehensive federal law specifically targeting genetic data privacy. This legislation should:

Require tiered, transparent consent

Prohibit re-identifying anonymized data

Restrict unauthorized third-party sharing

Empower a regulatory agency to enforce compliance

While voluntary programs may improve corporate behavior, only federal law can guarantee universal protections and accountability.

# data[].attributes.body
Whether or not you’ve ever taken a genetic test, your DNA may still be traceable—especially if a relative has used one of these services. That’s why this issue affects everyone. Genetic information is uniquely sensitive and can’t be “reset” once shared. It has lifelong implications for your health, family relationships, and even insurance or employment opportunities. By demanding stronger protections, we’re not just talking about law—we’re talking about basic rights, dignity, and trust in an age of data-driven health care.

# data[].attributes.body
Allyse, M., Robinson, D. H., Ferber, M. J., & Sharp, R. R. (2018). Direct-to-consumer testing 2.0: Emerging models of direct-to-consumer genetic testing. Mayo Clinic Proceedings, 93(1), 113–120. https://doi.org/10.1016/j.mayocp.2017.11.001
Gymrek, M., McGuire, A. L., Golan, D., Halperin, E., & Erlich, Y. (2013). Identifying personal genomes by surname inference. Science, 339(6117), 321–324. https://doi.org/10.1126/science.1229566
Hudson, K. L., Holohan, M. K., & Collins, F. S. (2008). Keeping pace with the times—The Genetic Information Nondiscrimination Act of 2008. New England Journal of Medicine, 358(25), 2661–2663. https://doi.org/10.1056/NEJMp0803964
Phillips, A. M. (2016). Only a click away—DTC genetics for ancestry, health, love... and more: A view of the business and regulatory landscape. Applied & Translational Genomics, 8, 16–22. https://doi.org/10.1016/j.atg.2016.01.001
U.S. Government Accountability Office. (2010). Direct-to-consumer genetic tests: Misleading test results are further complicated by deceptive marketing and other questionable practices (GAO-10-847T). https://www.gao.gov/products/gao-10-847t