Protecting Privacy and Facilitating Shared Access of Clinical and Genetic Data of Special Populations

PI:Shelly Cole (Texas Biomed), Lucila Ohno-Machado (UCSD),
Julie Stoner (OUHSC)
Co-PIs:Cinnamon Bloss, Cole Davisson, Xiaoqian Jiang, Shuang Wang
Staff:Tyler Bath, Elizabeth Bell, Cynthia Cheung, Akiko Garcia, Jihoon Kim
Grant:NHLBI R01 HL136835
Contact Email:
Start date of Project:2017
Expected duration of Project:4 years
Description of Project:
Data accessibility to the research community is crucial for large studies such as the Strong Heart Study (SHS) funded by the National Heart, Lung, and Blood Institute (NHLBI). At the same time, research data should be accessed in a responsible manner and no harm should be done to the individuals who share their data for research. However, clinical data sharing raises public concern that demographics, diagnostic codes, genome sequences, etc., can pose risks for individual privacy, with potential implications for employment, insurance, and cultural identity, particularly for underserved and disadvantaged population groups. Current privacy policies for data de-identification are inadequate to provide sufficient protection to privacy or to provide a guarantee that data use agreements are honored. This project aims to protect privacy, provide data access and analyses to only those researchers approved to conduct a certain study or query, and facilitate shared access of clinical and genetic data of special populations. The proposed framework will move the analysis code to the data rather than moving the data to the analysis code. The proposed aims are as follows:
Aim 1: Develop a secure data-centric service to protect computation on SHS data based on governance practices that are acceptable to participating tribes, SHS researchers, and the NIH
Aim 2: Develop federated computing models to support the SHS Coordinating Center and the Genetics Center to analyze data in a distributed manner
Aim 3: Assess data sharing expectations and preferences of SHS participants to inform the implementation of the data sharing models that are developed
Additional links to other sites/Publications:
Link to NIH Reporter