Genes and plays: Bringing ethical issues to life

Tragedy Comedy masks with helices around

Overview

Challenging ethical issues pervade genomic research. They range from returning research findings to individuals to maintaining the privacy of genomic information. How a person perceives and responds to the ethical, legal and social issues (ELSI) of genomic research depends on his or her values and perspectives.

These complex, sometimes emotionally charged issues are ripe for innovative approaches to enhance greater understanding and respect for different points of view. In response, Karen Rothenberg, J.D., and Lynn Bush, Ph.D., created the first two in a series of short plays to help convey the complexity of ethical issues raised by genomic research.

Professor Rothenberg is a special advisor to the National Human Genome Research Institute and visiting scholar at the National Institutes of Health Department of Bioethics on leave from the University of Maryland, School of Law, and Dr. Bush is an adjunct associate research scientist at Columbia University Medical Center's Department of Pediatrics, Division of Clinical Genetics.

The first play focuses on whole genome sequencing (a laboratory process that determines the complete DNA sequence of a person's genome at a single time) and the informed consent process (the process by which a fully informed patient can decide whether to participate) in the context of personal and professional relationships. The play, It's Not That Simple, is accompanied by a special article, Genes and plays: Bringing ELSI issues to life, which also looks at the use of existing plays to enhance discussions among various disciplines. Both are published in the February issue of Genetics in Medicine. The second play highlights dilemmas involved with returning research results and incidental findings to study participants in the course of whole genome sequencing. It will be published with accompanying commentary in the March issue of the same journal.


Dialogues, dilemmas and disclosures: genomic research and incidental findings

Reports of genomic sequencing expanding from research into clinical practice have begun to appear, but much needs to be done before the use of sequence data will be routine. One of the emerging ethical issues is whether, what, to whom and how much genomic information should be disclosed to individual participants and their families.

To shed light on some of the personal, familial and professional challenges raised by reporting genomic results and incidental findings discovered during whole genome sequencing (a research test that allows us to analyze many genes from a person), Karen Rothenberg, J.D., and Lynn Bush, Ph.D., and co-authored a second short play, It's So Complicated!, the sequel to It's Not That Simple!.

The second play features dialogues and dilemmas raised by disclosing incidental findings. It also illustrates the inherent tensions experienced by the researcher or clinician who shares findings with family members from different generations with different values. The play and a commentary were published in the March 5 issue of Genetics in Medicine.

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Last Updated: March 6, 2012