I found out about my own BRCA1 mutation because my father submitted a saliva sample to a consumer genetics company to trace our family ancestry. He had opted out of the health screening portion of the test. A finding came back anyway. That is how it reached me. Not through the clinical system. The company that sent him that report, 23andMe, filed for bankruptcy in March 2025.
While all of this plays out in the US, there is a different version of the same story running elsewhere. China has a stated goal of 100 million genomes by 2030 as part of a national precision medicine program. Certain provinces have been offering free prenatal genetic testing since 2019. BGI, the Chinese genomics company, has driven sequencing costs to under $100 per genome and operates across more than 100 countries. The UK committed £650 million to sequence every newborn. These countries did not solve the reimbursement problem. They removed it. Genomic medicine became infrastructure, funded the way a government funds a highway. The test does not need to fight for a coverage policy when the state has already decided the test gets done.
The United States is not falling behind on data collection. The data is flowing. It flows through hospital biobanks, research programs, the genomic tests that do get approved, and the normal mechanics of bankruptcy proceedings, where patient data becomes a balance sheet asset like any other. The US genomic dataset is enormous. What it is not is intentional. There is no national program, no coordinated infrastructure, no design for who the data serves or what flows back to the people who generated it.
There is something in all of this that rhymes with Henrietta Lacks. In case you do not know her story: she was a Black woman from Baltimore who died of cervical cancer in 1951 at the age of 31. Doctors at Johns Hopkins took a sample of her tumor cells without her knowledge or consent. Those cells, now called HeLa cells, became the first human cell line that could be grown indefinitely in a lab. They were used to develop the polio vaccine. They have been central to cancer research, HIV research, and countless other breakthroughs. They have generated billions in revenue. Her family found out decades after her death. They received nothing. For years they could not afford health insurance.
The consent structures in genomics are more formalized now. But someone is still benefiting from this data. And it is most often not the person it came from.