In the realm of health care, privacy protections are needed to preserve patients' dignity and prevent possible harms. Ten years ago, to address these concerns as well as set guidelines for ethical health research, Congress called for a set of federal standards now known as the HIPAA Privacy Rule.
In its 2009 report, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research, the Institute of Medicine's Committee on Health Research and the Privacy of Health Information concludes that the HIPAA Privacy Rule does not protect privacy as well as it should, and that it impedes important health research.
Institute of Medicine. 2009. Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research. Washington, DC: The National Academies Press. https://doi.org/10.17226/12458.
|Overview of Conclusions and Recommendations||15-62|
|2 The Value and Importance of Health Information Privacy||75-110|
|3 The Value, Importance, and Oversight of Health Research||111-152|
|4 HIPAA, the Privacy Rule, and Its Application to Health Research||153-198|
|5 Effect of the HIPAA Privacy Rule on Health Research||199-244|
|6 A New Framework for Protecting Privacy in Health Research||245-284|
|Appendix A: Previous Recommendations to the Department of Health and Human Services||285-292|
|Appendix B: Commissioned Survey Methodology||293-300|
|Appendix C: Committee Member and Staff Biographies||301-310|
|Abbrevations and Acronyms||311-314|
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