Northwestern University

NUgene: Gene-Disease Association and Treatment OutcomesRex L. Chisholm Center for Genetic MedicineGenetic bank with ‘blood-based samples and health information’Unrestricted. Samples and information to be ‘shared with researchers for future research about the role of genes play in human disease’.Patients at Northwestern Memorial Hospital or its affiliatesUnlimited11,000Blood donation. Brief questionnaire. Allow ongoing access to EMR from any visit at any facilityBlood; Information from all current and previous health care from all NU affiliates; Information from all current and previous health care from all NU affiliates.EMR linkage, including HIV and mental health dataEMR linkage, including HIV and mental health dataResearch about the role of genes play in human diseaseIndefinite; consent does not expire unless specifically revokedNot included. Opt in or opt out for NUgene NewsletterOpt in or outDe-identified samples and health information stored in one or more scientific databases with restricted access. Results may be used for teaching, research, publications, meeting presentations.VoluntaryOpt in/out for future contac; Opt in/out for receipt of newsletter.Blood draw; General risk in allowing access to hospital medical records; Genetic research results may possibly lead to health or life insurance discrimination as well as job or social discrimination; Psychological discomfort (questionnaire).De-identified samples and data; Certificate of Confidentiality from Fed’l Govt.No direct benefits; General societal benefits.Right to respectful treatment, withdrawal at any time without untoward consequences, speak with someone not directly involved in project (OPRS phone number)No cost, No remuneration.No compensationRevoke at any time. Separate revocation needed for blood/ tissue and for health information. Health information obtained before revocation still may be used and/or sharedOPRS phone number, PI address and phone number.Yes, subject or subject’s authorized representative (parent, spouse, legal guardian, or other authorized agent)No. Does not state that biological materials are inherently identifiable11/4/2009ILUSAeMerge