AdventHealth last week launched a $2 million DNA test project and began offering free DNA tests to 10,000 Florida patients—but some ethics experts warn that participants may not be fully aware as to how their DNA data can be used, the Associated Press reports.
The WholeMe program
The health system, through a partnership with private genomics company Helix, last week initiated its $2 million DNA test project, called the WholeMe program. The project will screen Florida residents for an inherited condition called familial hypercholesterolemia that causes high cholesterol and, if left untreated, can lead to cardiovascular disease or a heart attack.
Participants who screen positive for the condition will undergo a second blood test to confirm their diagnosis. AdventHealth will then connect them with a genetic counselor, free of charge, and refer them to a cardiologist.
Wes Walker, associate chief medical information officer at AdventHealth, said providing counselors and cardiologists as follow-up contacts could help participants make 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."
AdventHealth said it aims to expand the project across its 46-hospital health system, which spans nine states. The health systems said that the participants' data from the program may also be used for other research purposes within the health system's new genomics program
Who will have access to the data?
However, Stanford University biomedical ethicist Mildred Cho said that prospective program participants should be aware that their data and test results could be used for purposes beyond their personal health records.
While Helix on its website said it doesn't sell participants' DNA data, the company said it does evaluate legal requests for the data on a case-by-case basis. In an increasing number of "high-profile cases," detectives have identified suspects by putting information into DNA databases and finding the suspect through their family tree, AP reports.
AdventHealth said that researchers will seek participants' consent if researchers want to use participant data for additional studies. The health system added that the program is overseen by an institutional review board that will ensure the participants' data is protected by HIPAA privacy safeguards (AP/Modern Healthcare, 7/25; AdventistHealth release, 7/26).