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Session description: The session will provide an introduction to the ethics of research involving human participants. It will ad-dress the history of research ethics, present a contemporary eth-ical framework, and discuss its application to differing kinds of research studies. The ethical framework consists of four principles: respect for persons, beneficence, justice, and respect for communities. Each principle provides the foundation for ethical rules, including requirements for informed consent and confidentiality of health information. Taken together these ethical principles and rules provide a comprehensive framework for the analysis of ethical challenges in health research.

More than 60 years ago, Johns Hopkins researchers took cells from a cancer patient - cells that fueled medical breakthroughs, but were used without her consent. Now, her family has reached an agreement with the National Institutes of Health. Terrell Brown reports.

Genomics England, with the consent of participants and the support of the public, is creating a lasting legacy for patients, the NHS and the UK economy through the sequencing of 100,000 genomes: the 100,000 Genomes Project.

The Future of Research is being decided now! While we are fortunate to have a robust system of protections in place that help assure research will provide more benefit than harm, the regulations that guide research with human participants have been in place for 40 years. Society is changing, technology is changing, the capabilities and interests of all of us are changing. We need to evolve our research systems too. It is increasingly hard for one group to decide what would be considered a benefit, or a harm, for another. In this new People Matter Project video, we call to institutions and Institutional Review Boards (IRBs) to think creatively about how to conduct trustworthy research in this changing climate.

The Tuskegee Syphilis Study was initiated because known treatments for syphilis, in 1932, had shown little demonstrated effect, in addition to being toxic and dangerous. The dependent variable in the Tuskegee Experiment (the knowledge researchers wanted), was whether persons with syphilis were, in fact, better off without the treatment.

In 1932, the Public Health Service, working with the Tuskegee Institute, began a study to record the natural history of syphilis in hopes of justifying treatment programs for blacks. It was called the "Tuskegee Study of Untreated Syphilis in the Negro Male."