An operator of hospitals and clinics began offering free DNA testing on Wednesday to 10,000 Floridians in a partnership with a private genomics company. Some biomedical ethicists warn that participants need to realize their data can be used for purposes other than their health care.
Researchers at AdventHealth in Orlando said the DNA test screens for an inherited condition that can lead to high cholesterol and heart attacks if left untreated. Participants who screen positive will get a second blood test to confirm the diagnosis, get to talk with a genetic counselor at no charge and be put in touch with a cardiologist.
“It’s treatable,” said Dr. Wes Walker, associate chief medical information officer at AdventHealth, who is one of the leaders of the $2 million project.
AdventHealth said data from the “WholeMe” program also will be used for other research purposes as the health system grows its newly minted genomics program.
A similar program in Nevada involving the same genomics company, Helix, has enrolled 30,000 participants. AdventHealth hopes to eventually scale up the project across its health system, which encompasses 46 hospital campuses in nine states.
Stanford University biomedical ethicist Mildred Cho warned that participants need to be aware their data will be used for purposes other than their personal health care.
AdventHealth said researchers will seek additional consent if they want the data for additional studies. The project also is overseen by an institutional review board to ensure privacy measures are in place and that the gathered data are protected by HIPAA privacy safeguards.
On its website, Helix said it doesn’t sell participants’ information for any reason. But the company said it evaluates requests by law enforcement and other legal requests for data on a case-by-case basis. Detectives in a growing number of high-profile cases have identified suspects by entering crime-scene DNA profiles into databases that became popular as a way for people to document their family trees.
Past studies of people who got doctor-ordered DNA test results about disease risks have been mixed: Several show that DNA information produced no significant effect on participants’ diet, physical activity, drinking alcohol or quitting smoking.
The AdventHealth researchers hope the follow-up contact will steer participants toward healthier choices.
“It’s not providing them the results, and they’re then on their own,” Walker said. “It really becomes part of their overall care.”