Online Education Kit: Guidance for ELSI Vignettes

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Guidance for ELSI Vignettes

Where and how should society respond to and integrate genetic information? The following vignettes provide an opportunity to explore this question in a variety of situations. They are designed to elicit an open-ended discussion. Everyone should be aware that there are no right or wrong answers.

As the discussion proceeds, the facilitator should remind the participants that genes are not "everything" and that an individual's health and behaviors are influenced by complex interactions between multiple environmental, social and genetic factors. There is a tendency for people to lose sight of the complexity of these non-genetic influences when discussing these issues. The facilitator should also keep in mind that different participants will approach the utilization or interpretation of genetic information in different ways and that each will bring to the discussion their own knowledge, perceptions and beliefs.

These vignettes raise some potentially sensitive issues (e.g., loss of a parent, the death penalty, discrimination, diseases such as breast cancer and Alzheimer's, etc.) Some discussants may have had personal experiences that will influence their responses to a particular vignette. Discussion facilitators should anticipate that such individuals might find these discussions sad, embarrassing and/or difficult and should be prepared to provide them with support.

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Last Reviewed: March 30, 2012