Direct-to-consumer genetic tests: what you should know

A Youngtimers Guide ・ Last Reviewed July 2, 2025

Going online for do-it-yourself genetic testing may seem like a way to avoid the cost and hassle of the traditional genetic testing route. But people who are at-risk of FAD should be careful when considering these tests. 

Companies like 23andme offer a new alternative: direct-to-consumer (D2C) genetic testing. Although they don’t test for FAD genetic mutations in their reports, consumers can work around this by downloading their full, raw genomic data and using other online tools for analyzing the data.

False results

Direct-to-consumer (D2C) genetic tests are not FDA approved for detecting mutations that cause familial Alzheimer’s disease (FAD), and they cannot be relied upon for this specific purpose.

People who have turned to D2C genetic tests for insight about FAD genetic have experienced both false positives and false negatives. 

In one case, a D2C genetic test misdiagnosed a man with a PSEN1 mutation ⧉ with no family history of the disease. He was desperate to learn whether the diagnosis was accurate, but because he had no family history or other indicators, he struggled to find a medical professional who would order a test to confirm. He ultimately found a genetic counselor to administer professional genetic testing, and was relieved to learn that he did not carry the genetic mutation the D2C test had reported.

In another case, a D2C genetic test led one member of the Youngtimers community to believe they did not inherit their father’s PSEN1 genetic mutation. Unfortunately, after seeking out formal genetic testing to confirm their negative result, this person learned that they do carry the mutation.

Getting a false result for a genetic mutation can be traumatic. But perhaps even worse, it can go undiscovered. Upon receiving inaccurate results, one might spread false information to others, and make important decisions based on the inaccurate result. 

Privacy

While S2C genetic testing companies tout their security measures, recent events highlight concerns regarding the handling and protection of genetic data.

Data breaches compromise personal information

In October 2023, 23andMe disclosed a breach that impacted about 7 million customers ⧉. The breach exposed ancestry information and health-related data for some users. Such incidents raise concerns, especially when it comes to diseases like FAD, where genetic predispositions can be revealed through this data.

Ownership changes and security concerns

Another issue that customers worry about is what could happen if a genetic testing company changes hands. In such a scenario, the new owners might have different policies or lower security standards, which could put your data at further risk.

In June 2025, a judge approved the sale of 23andMe — and its trove of DNA data ⧉.

The bottom line

At this time, D2C genetic tests are not FDA approved for detecting mutations that cause FAD, and cannot be relied upon for this specific purpose. Be wary of direct-to-consumer genetic testing options.