gap_dec22.doc - Partners HealthCare System Genetics...

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Partners HealthCare System Genetics Research Advisory Panel Report I. Preamble The Partners HealthCare System Genetics Research Advisory Panel was convened in June, 2000 for the purposes of examining the issues related to genetics research involving human subjects, and developing guidelines for researchers and members of the Human Research Committee (Partners’ Institutional Review Board or IRB). The goal of this advisory panel is to foster quality research and to strengthen the protection of people who volunteer to participate in genetic studies by improving the communication and understanding of genetic investigators and IRB members. A. Charge to the Committee 1. Review and summarize current Partners policies and procedures related to genetics research, within the context of other national and international guidelines. 2. Identify and analyze current problems and controversies about genetics research as it affects individuals and society. These include: 1. Research use of archived specimens that carry identifiers 2. Prospective collection of specimens for unspecified use in future genetic studies 3. Use of genetic information obtained in a research setting for medical decision making 4. Maintenance of privacy and confidentiality of genetic information 3. Recommend policies and procedures that will guide investigators, IRBs and institutions about how to conduct and oversee genetic research and its applications for clinical management. B. Background Genetic research has resulted in important advances in medicine and public health. It has increased our understanding of how genetic changes can contribute to complex diseases such as cancer and heart disease, and has led to the development of tests that can identify individuals who may be at risk for certain conditions. The mapping of the human genome, completed April 2003, will no doubt accelerate the pace of this research. But this progress has also created challenges, both for researchers and individuals who serve on IRBs. The field of genetics – along with its language and the possibilities for research – seems to expand daily. IRBs have suddenly been asked to consider a large number of genetic research protocols, yet IRB members may have little knowledge or expertise in this area. And these challenges will only grow in the future. We are entering an era where genetics and genomics are going to be at the center of both research and patient care. Not surprisingly, this new field is also raising scientific, ethical, legal and social issues. People on the frontlines – whether in research laboratories or on IRB panels – are asking for guidance about how to make decisions about particular studies. GAP Draft report (October 02 Version), 7/28/17 1
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This document incorporates the HIPAA guidelines that became effective April 14 th , 2003.
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