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

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: