Withdrawing Data from AnVIL
AnVIL facilitates the removal of individual-level data from studies stored and managed by the resource, honoring the right of research participants to change their preferences with regard to future data sharing.
AnVIL’s practices also reflect the practical limits of participant withdrawal and aim to balance participant autonomy with reproducibility and transparency.
Expectations of Submitters to AnVIL
- Submitters are responsible for informing AnVIL staff that a participant has requested withdrawal of their data from a study by contacting email@example.com and cc: firstname.lastname@example.org as soon as possible.
- AnVIL cannot remove data at the request of a participant, as we do not have identifying information that links participants to their data. Participants who are interested in withdrawing should contact the institution in which they enrolled.
AnVIL Withdrawal Procedures
- AnVIL will remove individual-level data upon receiving a request from a submitter to withdraw a participants’ data within 30 days of receiving the request.
- AnVIL will delete individual-level files containing original and processed data (e.g., imputed data) from the participant that has requested to withdraw their data.
- AnVIL will work with the submitter to address individual-level data in joint files (e.g., joint calls or imputed genotype calls).
- If a participant’s data are included in aggregate or summary-level products (e.g., allele frequency count), the products will not be modified.
- AnVIL will inform all approved users that a new version of the dataset is available when individual-level data has been removed. AnVIL will request that users utilize the new version.
- Downloaders will be responsible for using the most current version of the dataset, and destroying all versions of the dataset when their project is ended or access revoked (in accordance with the NIH Data Use Certification).
- AnVIL will inform cloud users working with data in a Workspace at least two weeks before the underlying data are modified.
- AnVIL will maintain records of all withdrawal requests.