{"doi":"10.1093/jamia/ocad021","title":"Managing re-identification risks while providing access to the <i>All of Us</i> research program","abstract":"OBJECTIVE: The All of Us Research Program makes individual-level data available to researchers while protecting the participants' privacy. This article describes the protections embedded in the multistep access process, with a particular focus on how the data was transformed to meet generally accepted re-identification risk levels. METHODS: At the time of the study, the resource consisted of 329 084 participants. Systematic amendments were applied to the data to mitigate re-identification risk (eg, generalization of geographic regions, suppression of public events, and randomization of dates). We computed the re-identification risk for each participant using a state-of-the-art adversarial model specifically assuming that it is known that someone is a participant in the program. We confirmed the expected risk is no greater than 0.09, a threshold that is consistent with guidelines from various US state and federal agencies. We further investigated how risk varied as a function of participant demographics. RESULTS: The results indicated that 95th percentile of the re-identification risk of all the participants is below current thresholds. At the same time, we observed that risk levels were higher for certain race, ethnic, and genders. CONCLUSIONS: While the re-identification risk was sufficiently low, this does not imply that the system is devoid of risk. Rather, All of Us uses a multipronged data protection strategy that includes strong authentication practices, active monitoring of data misuse, and penalization mechanisms for users who violate terms of service.","journal":"Journal of the American Medical Informatics Association","year":2023,"id":342302,"datarank":0.6410827024129041,"base_score":2.70805020110221,"endowment":2.70805020110221,"self_citation_contribution":0.40620753016533157,"citation_network_contribution":0.23487517224757257,"self_endowment_contribution":0.40620753016533157,"citer_contribution":0.23487517224757257,"corpus_percentile":69.08021969521157,"corpus_rank":3998,"citation_count":14,"citer_count":8,"citers_with_citation_signal":6,"citers_with_endowment":6,"datacite_reuse_total":0,"is_dataset":true,"is_dataset_confidence":0.6724,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2023-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":555876,"name":"Melissa Basford","orcid":"0000-0002-0703-2422","position":1,"is_corresponding":false},{"id":251747,"name":"Robert J. Carroll","orcid":"0000-0003-3802-8183","position":2,"is_corresponding":false},{"id":368926,"name":"Ellen Wright Clayton","orcid":"0000-0002-0308-4110","position":3,"is_corresponding":false},{"id":64981,"name":"Paul A. Harris","orcid":"0000-0002-1744-2011","position":4,"is_corresponding":false},{"id":372867,"name":"Murat Kantacioglu","orcid":null,"position":5,"is_corresponding":false},{"id":371611,"name":"Yongtai Liu","orcid":"0000-0002-4550-7070","position":6,"is_corresponding":false},{"id":371614,"name":"Steve Nyemba","orcid":"0009-0009-5377-0037","position":7,"is_corresponding":false},{"id":371613,"name":"Yevgeniy Vorobeychik","orcid":"0000-0003-2471-5345","position":8,"is_corresponding":false},{"id":371612,"name":"Zhiyu Wan","orcid":"0000-0003-3752-5778","position":9,"is_corresponding":false},{"id":320509,"name":"Bradley Malin","orcid":"0000-0003-3040-5175","position":10,"is_corresponding":false},{"id":371610,"name":"Weiyi Xia","orcid":"0000-0003-0406-4944","position":0,"is_corresponding":true}],"reference_count":29,"raw_metadata":null,"created_at":"2026-07-19T01:11:12.506815Z","pmid":"36809550","pmcid":"PMC10114067","fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}