A joint agreement produced by pharmaceutical trade groups PhRMA and EFPIA, affirming the industry’s commitment to responsible data sharing.
An overview of global biobank development, outlining the critical research role of biobanks and their potential impact on patient care.
A supplemental declaration to the Declaration of Helskini, which provides additional principles for the ethical use of human biological materials in biobanks, as well as the ethical use of data in health databases.
Full text of the Health Insurance Portability and Accountability Act (HIPAA), the key federal law governing data privacy and security of medical information.
A U.N. convention to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.
This commentary discusses the benefits and risks of data sharing from the perspective of persons with experience in academic medicine, government, and medical publishing, as well as the pharmaceutical industry.