Illinois House Bill 5076 was developed by the Illinois Department of Public Health and is supported by a number of public health advocacy organizations as well as academic research institutions. If enacted, the bill will promote critically-important academic research on biomedical and health issues by setting up strict rules allowing IDPH to share certain data with researchers as long as the confidentiality of that data is carefully protected. In simple terms, under this legislation IDPH will be allowed to share the name, address and other personal information of people involved in the research study only if approved by an independent review board.
House Bill 5076 passed the House by a vote of 106-0! Please follow the link below to contact your Senator to ask them to co-sponsor and vote for HB 5076 in the Senate:
Responsible Information-sharing is vital to carrying out biomedical research moving us toward a healthier future free of cardiovascular disease and stroke. At the same time, confidentiality of that information must be protected. Whether studying the risk factors of these diseases, discovering treatments, or ensuring a better quality of life for heart and stroke survivors -- this legislation accomplishes both goals. Under this legislation, the name, address or other unique personal identifier of an individual supplying the data or described in it cannot be disclosed unless an IDPH-approved independent Institutional Review Board or its equivalent on the protection of human subjects in research has reviewed and approved the data request.
Thank you for your help on this important health issue.