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All of Us Program to Delete Genetic Ancestry, Trait, Health Info From Participant Accounts

Population Genomics

NEW YORK – The US National Institutes of Health's All of Us research program will no longer provide participants with access to certain genetic test results obtained through the project starting next month.

In an email sent to participants on Wednesday, All of Us said genetic ancestry and trait DNA results will be deleted from their accounts effective Nov. 22.

Health-related DNA test results will remain available as PDFs in an updated system beginning in January of next year, but only if participants log on to view them before Nov. 22. The PDFs, too, will be deleted from participants' accounts at the end of 2025.

Participants will also lose access to notes from past genetic counseling sessions as of Nov. 22. Additionally, they will no longer be able to schedule appointments with a genetic counselor after that date.

In its email, the All of Us program advised participants to download all data slated for deletion. In particular, it directed participants to log into their accounts and view their health-related results before Nov. 22 in order to keep the PDF of those results in their accounts throughout next year.

The move follows reports of the program receiving less government funding than in previous years, triggering the need to find new funding sources. All of Us was allotted $357 million for the 2024 congressional fiscal year ending Sept. 30. This constitutes a $184 million cut to FY2023 budget.

According to Anastasia Wise, research program director in charge of returning information to participants, the decision was not motivated by the budget reduction, however.

"It is aimed at improving the way we return DNA results to participants," she said in an email. "We are updating the system that allows us to return research DNA results to participants to provide a better experience." She did not elaborate on the planned updates but said that participants waiting to receive their DNA results "will be offered them in a new format."

All of Us already had to scale back its pediatric recruitment efforts due to budget cuts last year. Congress still has to finalize funding for FY2025, for which All of Us has requested $541 million.

"We know these are big changes to how we share DNA results," the organization wrote in its email to participants. "As a research program, we are always learning and growing. We do our best to listen to our participant partners and adapt to changes in our program. Despite these changes, our vision remains the same: to drive discoveries that lead to better health and provide you with information that matters to you."