It started with curiosity. A simple test. A promise of answers.
For many people, ordering a genetic testing kit like 23andMe felt empowering. With just a few clicks and a saliva sample, they hoped to uncover family roots, solve health mysteries, or find out if they carried genes that could explain everything from lactose intolerance to their risk for cancer or Alzheimer’s disease. No waiting room, no physician, just insights delivered to their inbox.
What happened to 23andMe?
Founded in 2006, 23andMe pioneered direct-to-consumer (DTC) genetic testing by offering ancestry and health insights without a doctor’s order. According to industry reports, over 15 million people used its services, especially during the pandemic when personalized health surged in popularity.
However, in October 2023, the company disclosed a massive data breach affecting 6.9 million users. While only a small portion of accounts were directly hacked, shared data features allowed broader exposure, including sensitive ancestry and DNA information.
By early 2025, facing lawsuits, privacy concerns, and plummeting trust, 23andMe filed for bankruptcy.
This wasn’t just a tech failure; it was a wake-up call. Patients lost control over their genetic data, triggering ethical, safety, and transparency concerns.
Even as the company collapses, patients still bring these reports to appointments, often confused or anxious about their reports’ findings and the data breach. Nurses must now navigate these conversations with clarity, caution, and an understanding of the limitations of DTC testing and the need to protect patient trust.
Patients seek clarity
When patients bring DTC genetic test results to a doctor’s appointment, they often come with valid concerns. Maybe they’re worried about the cancer risk indicated in the report. Maybe they’re wondering if they should switch medications based on a gene variant. Or maybe they’re just confused and want someone they trust, like a nurse, to explain what it all means.
Nurses are accustomed to translating complex medical information into clear, actionable steps. However, genetic test reports are often filled with technical language and ambiguous results requiring nuanced explanation.
Most of these tests aren’t diagnostic. They aren’t ordered in a clinical context, they often lack proper validation, and, ironically, they aren’t protected under HIPAA in the same way hospital records are.
That leaves nurses in an ethical gray zone. We’re often asked to educate patients without appearing to endorse the results, offer guidance without crossing into a diagnosis, and know when to escalate concerns that may require clinical follow-up — a tall order.
Here's how to navigate conversations with patients about genetic data — clearly, carefully, and confidently.
Understand what was tested
Not all genetic tests are created equal. Some focus solely on recreational traits, such as taste preferences or eye color, while others claim to offer health risk assessments. However, most DTC genetic tests only look at a small subset of genes and lack the depth of clinical-grade genomic panels.
They often don’t factor in personal or family medical history, lifestyle, or epigenetic changes when these are essential to proper interpretation.
Clarify the limitations
A patient may misinterpret a result labeled “increased risk” or “variant detected” as a definitive diagnosis. It’s important to explain that these results indicate possibility, not certainty.
For instance, someone whose results indicated a BRCA1 variant shouldn’t make any medical decisions without confirmatory testing through a clinical lab and a consultation with a certified genetic counselor.
Protect patient privacy
Uploading unverified DTC test results into the electronic health record can be risky. Not only might the data be incomplete or inaccurate, it may also introduce complications regarding insurance, discrimination, or future consent.
Nurses should document that a conversation took place, but they should avoid incorporating third-party reports into the chart unless clinically validated through a CLIA-certified facility.
Know when to look deeper
You don’t need to be a genetics expert, but you must know when to escalate a concern. Primary care providers are a good first step for coordination, but aren’t always the most qualified to interpret complex genetic findings.
For more specialized interpretation, healthcare teams may consider recommending that the patient consult a certified genetic counselor or, in some cases, a medical geneticist, particularly for test results involving cancer susceptibility genes, carrier screening, pharmacogenomic alerts, or if their results may influence family planning or treatment decisions.
Patient trust and health equity
The breach at 23andMe highlights another deep concern: What happens to patient trust when data is mishandled?
Many patients already feel uncertain when navigating the healthcare system. For communities with historical trauma tied to medical experimentation or racial bias in healthcare, this kind of breach reinforces distrust.
According to a 2022 Pew Research Center report, only 28% of Black Americans and 29% of Hispanic Americans said they had a “great deal of confidence in medical scientists to act in the public’s best interest." This breach can potentially deepen that mistrust, especially when data that patients believed was secure ends up leaked or sold.
Nurses must be ready to speak to these concerns from a place of cultural competence and advocacy. We’re the bridge between uncertainty and understanding for patients. And that matters now more than ever.
Looking ahead: Nurses’ role in precision health
Healthcare is becoming more personalized, and genetic testing done responsibly can contribute to that. Without clinical oversight or confirmatory testing, these reports can provide insights, but often lack the necessary clinical validation to drive care decisions.
This is where precision health comes in. Precision health takes a proactive, personalized approach to care by considering an individual’s unique genetic makeup, lifestyle, environment, and even social determinants of health. It’s not just about treating illness; it’s about predicting and preventing it and tailoring care strategies to fit the patient, not the population.
As nurses, we must:
- Guide patients through genetic test results with compassion and clarity — without breaking our employers’ policies on discussing this type of information.
- Stay updated on ethical and regulatory developments related to health data.
- Understand when to refer and how to document appropriately.
- Advocate for better protections around consumer health information.
We are at the intersection of innovation and patient care. As trusted professionals, we have the opportunity and responsibility to ensure that precision health isn’t only scientifically sound but ethically grounded and equitably applied. That’s how we protect our patients, uphold our practice, and shape the future of healthcare.
We must also push for more education and professional development in this area. Organizations like the National Human Genome Research Institute (NHGRI) and the International Society of Nurses in Genetics (ISONG) offer free resources, position papers, webinars, and real-world clinical case studies.
Trust is earned — let’s keep earning it
In this era of innovation, data, and digital health, the public’s trust in nurses matters more than before. As tools like genetic testing become more mainstream, our role in guiding patients through these technologies will continue to evolve.
We're no longer just interpreters of vital signs and lab results. We're stewards of personal health data, educators in complex science, and protectors of patient privacy.
Trust is not a one-time achievement. We earn it through every conversation, every clarification, and every commitment to advocating for patients in a healthcare landscape that changes by the minute.
