Many bioethical challenges surround the promise of genomic technology and the power of genomic information — providing a rich context for critically exploring underlying bioethical traditions and foundations, as well as the practice of multidisciplinary advisory committees and collaborations. Controversial issues abound that call into question the core values and assumptions inherent in bioethics analysis and thus necessitates interprofessional inquiry. Consequently, the teaching of genomics and contemporary bioethics provides an opportunity to re-examine our disciplines’ underpinnings by casting light on the implications of genomics with novel approaches to address thorny issues — such as determining whether, what, to whom, when, and how genomic information, including “incidental” findings, should be discovered and disclosed to individuals and their families, and whose voice matters in making these determinations particularly when children are involved.
One creative approach we developed is narrative genomics using drama with provocative characters and dialogue as an interdisciplinary pedagogical approach to bring to life the diverse voices, varied contexts, and complex processes that encompass the nascent field of genomics as it evolves from research to clinical practice. This creative educational technique focuses on inherent challenges currently posed by the comprehensive interrogation and analysis of DNA through sequencing the human genome with next generation technologies and illuminates bioethical issues, providing a stage to reflect on the controversies together, and temper the sometimes contentious debates that ensue.
As a bioethics teaching method, narrative genomics highlights the breadth of individuals affected by next-gen technologies — the conversations among professionals and families — bringing to life the spectrum of emotions and challenges that envelope genomics. Recent controversies over genomic sequencing in children and consent issues have brought fundamental ethical theses to the stage to be re-examined, further fueling our belief in drama as an interdisciplinary pedagogical approach to explore how society evaluates, processes, and shares genomic information that may implicate future generations. With a mutual interest in enhancing dialogue and understanding about the multi-faceted implications raised by generating and sharing vast amounts of genomic information, and with diverse backgrounds in bioethics, policy, psychology, genetics, law, health humanities, and neuroscience, we have been collaboratively weaving dramatic narratives to enhance the bioethics educational experience within varied professional contexts and a wide range of academic levels to foster interprofessionalism.
Dramatizations of fictionalized individual, familial, and professional relationships that surround the ethical landscape of genomics create the potential to stimulate bioethical reflection and new perceptions amongst “actors” and the audience, sparking the moral imagination through the lens of others. By casting light on all “the storytellers” and the complexity of implications inherent with this powerful technology, dramatic narratives create vivid scenarios through which to imagine the challenges faced on the genomic path ahead, critique the application of bioethical traditions in context, and re-imagine alternative paradigms.
Building upon the legacy of using case vignettes as a clinical teaching modality, and inspired by “readers’ theater”, “narrative medicine,” and “narrative ethics” as approaches that helped us expand the analyses to implications of genomic technologies, our experience suggests similar value for bioethics education within the translational research and public policy domain. While drama has often been utilized in academic and medical settings to facilitate empathy and spotlight ethical and legal controversies such as end-of-life issues and health law, to date there appears to be few dramatizations focusing on next-generation sequencing (NGS) in genomic research and medicine.
We initially collaborated on the creation of a short vignette play in the context of genomic research and the informed consent process that was performed at the NHGRI-ELSI Congress by a geneticist, genetic counselor, bioethicists, and other conference attendees. The response by “actors” and audience fueled us to write many more plays of varying lengths on different ethical and genomic issues, as well as to explore the dialogues of existing theater with genetic and genomic themes — all to be presented and reflected upon by interdisciplinary professionals in the bioethics and genomics community at professional society meetings and academic medical institutions nationally and internationally.
Because narrative genomics is a pedagogical approach intended to facilitate discourse, as well as provide reflection on the interrelatedness of the cross-disciplinary issues posed, we ground our genomic plays in current scholarship and ensure that it is accurate scientifically as well as provide extensive references and pose focused bioethics questions which can complement and enhance the classroom experience.
In a similar vein, bioethical controversies can also be brought to life with this approach where bioethics reaching incorporates dramatizations and excerpts from existing theatrical narratives, whether to highlight bioethics issues thematically, or to illuminate the historical path to the genomics revolution and other medical innovations from an ethical perspective.
Varying iterations of these dramatic narratives have been experienced (read, enacted, witnessed) by bioethicists, policy makers, geneticists, genetic counselors, other healthcare professionals, basic scientists, bioethicists, lawyers, patient advocates, and students to enhance insight and facilitate interdisciplinary and interprofessional dialogue.
Dramatizations embedded in genomic narratives illuminate the human dimensions and complexity of interactions among family members, medical professionals, and others in the scientific community. By facilitating discourse and raising more questions than answers on difficult issues, narrative genomics links the promise and concerns of next-gen technologies with a creative bioethics pedagogical approach for learning from one another.
Heading image: Andrzej Joachimiak and colleagues at Argonne’s Midwest Center for Structural Genomics deposited the consortium’s 1,000th protein structure into the Protein Data Bank. CC-BY-SA-2.0 via Wikimedia Commons.