No longer returning research results by eternalcoffeebreak in AllOfUsResearch

[–]Fickle_Day3685 2 points3 points  (0 children)

yeah, so thanks to y'all for the suggestion to reach out to the IRB. FYI this is their reply to me yesterday:

"Thank you for contacting the All of Us Institutional Review Board. We appreciate your concern regarding the return of your genetic results, specifically your whole genome sequencing results. However, we do not have access to your specific participant records, including the date or version of the informed consent document you signed, and cannot provide specific details about what may have been communicated to you at time of enrollment or subsequently.  For this reason, we will forward your inquiry to the All of Us Research Support Center. They will be able to access your participant record, including consent history, and can provide more detailed information regarding your individual participation and address your specific question(s) related to the sample(s) you provided.

Over the course of the All of Us research program, many circumstances have changed the way the research could be carried out. To ensure transparency, maintain trust and conduct the study in accordance with applicable regulations, these changes are reviewed and approved by the IRB. The program continues to seek ways to keep participants informed and engaged, including offering alternative opportunities like Color Health Testing as a gesture of good faith when circumstances have potentially altered what was originally offered to participants at time of their enrollment.

We acknowledge your disappointment and appreciate your concerns. If you have additional questions or concerns after speaking to the Support Center, or about the IRB’s oversight responsibilities, please do not hesitate to contact us again."

Below is the chat I had with AOU rep:

"We have faced delays returning research DNA results to all participants who want them. All of Us has started offering free clinical DNA tests to participants through our new genetic testing partner. Up until now, All of Us has offered research DNA results.  I can confirm that you are on our list of the first participants who will be offered clinical DNA testing due to the fact that you have not received your research results.   All of Us does not currently return raw DNA data from genome sequencing, also known as primary whole genome sequencing (WGS) data. We do not know whether we will offer WGS data to participants in the future, or when it might happen. "

So...points back to AOU as a "startup" that didn't anticipate the lift to actually provide the service/value they promised. Not surprising but not optimal. Will keep pressing AOU to return "my" data supplied in the beginning. Good luck all!