Learning Objectives

Students should be able to:

1. Define and discuss the term “vulnerable population” in the context of human subjects research.

2. Understand the ethical considerations relevant to research with vulnerable populations.

3. Understand existing U.S. regulations and multinational guidelines that govern research with vulnerable populations, and their historical context.

4. Explain why and how research with vulnerable populations can be conducted ethically and can be of benefit to those populations.

Learning Objectives

Students should be able to:

Primary findings are the results you and your direct-to-consumer (DTC) provider are looking for when you sign up for a test. Incidental findings are results that your provider discovers, even though you were not looking for them. The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released a report that helps DTC providers manage these incidental findings. This guide helps you understand what those findings might be, and how you might prepare for them.

Primary findings are the results researchers are looking for when they conduct a test. Incidental findings are results that they discover, even though they were not looking for them. The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released a report that helps researchers manage these incidental findings. This guide helps you understand what those findings might be, and what questions you might ask the research team to prepare for them.

Primary findings are the results your clinicians (doctors, nurses, or technicians) are looking for when they conduct tests.  Incidental findings are results that they discover, even though they were not looking for them.  The Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released a report that helps clinicians manage these incidental findings.  This guide helps you understand what those findings might be, and what questions you should ask during your visit to prepare for them.

In December 2013, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released its report, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. The report outlines the types of findings that can arise from various tests and procedures in a variety of contexts, and makes 17 recommendations for the ethical and professional management of such findings.

In December 2013, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released its report, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consumer Contexts. The report outlines the types of findings that can arise from various tests and procedures in a variety of contexts, and makes 17 recommendations for the ethical and professional management of such findings.

In December 2013, the Presidential Commission for the Study of Bioethical Issues (Bioethics Commission) released its report, Anticipate and Communicate: Ethical Management of Incidental and Secondary Findings in the Clinical, Research, and Direct-to-Consum

Learning Objectives

Students should be able to:

1. Discuss the benefits, challenges, and ethical reasons to conduct community-engaged research.

2. Understand and discuss the differences between community engagement, community consent, and informed consent and be able to apply each concept appropriately in reference to a given research project under consideration.

3. Consider different means by which to engage communities in domestic and international research and how to determine the desired level of engagement in research. 

Learning Objectives

Students should be able to:

1. Describe the importance of engaging communities in the sharing of whole genome sequence data.

2. Explain how community engagement helps advance the ethical principles articulated in Privacy and Progress.

3. Identify ways in which community engagement might facilitate the recommendations made in Privacy and Progress.

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