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Genomics, Consent, and the Public Imaginary

A Conversation with Deborah Laufer and Charmaine Royal, facilitated by Jules Odendahl-James
December 7th, 2017
12:00 PM

  Upcoming Project   Add to Calendar 07-12-2017 12:00:00 07-12-2017 18:00:00 15 Genomics, Consent, and the Public Imaginary A Conversation with Deborah Laufer and Charmaine Royal, facilitated by Jules Odendahl-James DD/MM/YYYY

Thursday, December 7, 2017
12 pm - 1 pm

Forum for Scholars and Publics
Duke's West Campus Quad
011 Old Chem
Map & Directions

A light lunch will be served beginning at 11:45 am.

Please join us for conversation facilitated by Duke Professor Jules Odendahl-James between Deborah Zoe Laufer, award-winning playwright and Health Humanities artist-in-residence, and Duke Professor Charmaine Royal. They will discuss genetics in the public imaginary. The discussion will be introduced by Professor Karrie Stewart.

Laufer, supported by the Franklin Humanities Institute Health Humanities Lab, will be on campus as an artist in residence from December 5-8, 2017. She will be leading a course enhancement that requires all students in Professor Stewart's Global Health 341 (Ethics of Infectious Disease Control) to participate in a public reading of the award-winning play Informed Consent in the Sheafer Theater on Thursday, December 7, at 7 pm. The reading is free and open to the public.

Informed Consent is based on the true story of research misconduct by Arizona State University researchers working between 1989 and 2003 with the Havasupai, a Native American tribe who have lived in the bottom of the Grand Canyon for centuries. The play was a New York Times critic's pick in 2015. The diverse range of characters in Informed Consent grapple with the implications of genetic technologies that reveal more about our future, and our past, than our current value systems have answers for. How much should we know about ourselves? About others? Who gets to do this research and what do they owe the research participants? Is it ever appropriate to mislead a research participant? What is the value of belief when it conflicts with science? Is DNA destiny? These are some points to discuss in the conversation leading up to the performance.

Co-sponsored by the Forum for Scholars and Publics and the Health Humanities Lab at the Franklin Humanities Center.

Deborah Zoe Laufer

Deborah Zoe Laufer's play Informed Consent opened at the Duke on 42nd Street, a co-production of Primary Stages and Ensemble Studio Theatre, in August 2015. An Alfred P. Sloan Foundation commission through EST, it first received productions at Cleveland Playhouse and Geva Theatre Center. Her works have also been produced at Steppenwolf Theatre Company, Cincinnati Playhouse in the Park, Actor’s Theatre of Louisville, Portland Stage, and 80 other theaters around the country, in Germany, Russia, and Canada. End Days was awarded The ATCA Steinberg citation and appeared at Ensemble Studio Theatre through a Sloan Grant. It received a rolling work premiere through the National New Play Network, and went on to receive over 50 productions. Other plays include Leveling Up, Sirens, Out of Sterno, The Last Schwartz, Meta, The Three Sisters of Weehawken, Fortune, The Gulf of Westchester, Miniatures, and Random Acts. Laufer is a recipient of the Helen Merrill Playwriting Award and the Lilly Award and grants and commissions from The Edgerton Foundation, the NEA, and NNPN. Her plays have been developed at PlayPenn, The Eugene O'Neill NPC, Williamstown Theatre Festival, Ojai, The Missoula Colony, The Cherry Lane Alternative, The Dramatists Guild, New Georges, The Lark, Asolo Rep. and the Baltic Playwrights Conference. She is a graduate of The Juilliard School and a member of The Dramatists Guild.

Charmaine Royal

Duke University

Charmaine Royal is Associate Professor of African & African American Studies and Genome Sciences & Policy at Duke University. Her research, scholarship, and teaching focus on ethical, psychosocial, and societal issues in genetics and genomics, primarily issues at the intersection of genetics/genomics and concepts of "race", ancestry, and ethnicity. She serves on several national and international committees and boards, including the Steering Committee for the Registry and Surveillance System for Hemoglobinopathies (RuSH) Program, Bioethics Advisory Committee of the March of Dimes Foundation, Expert Panel for the World Health Organization's Grand Challenges in Genomics for Public Health in Developing Countries (Grand Challenges) Project, and the Independent Expert Committee for the Human Heredity and Health in Africa Initiative. She is the immediate past Chair of the Social Issues Committee of the American Society of Human Genetics.

Kearsley Stewart

Duke University

Kearsley (Karrie) Stewart, Ph.D., joined the Duke Global Health Institute in 2013 with a secondary appointment in Cultural Anthropology. She previously taught at Northwestern University, worked at the Centers for Disease Control in Atlanta as a behavioral scientist, and was a post-doctoral fellow at the Harvard Center for Population and Development Studies. Her dissertation focused on adolescent HIV/AIDS in Uganda. In addition, she implemented the first voluntary HIV rapid testing and counseling clinic in a rural area of Uganda and spearheaded changes in national HIV testing policies. Stewart’s current research interests include the research ethics of HIV/AIDS clinical trials in Africa, global health pedagogy, and global health humanities. Her research is supported by grants from NIH, NSF, and Fulbright. Stewart currently teaches both graduate and undergraduate courses in global health research ethics, ethics of infectious disease, narrative methods in HIV/AIDS research, and qualitative global health research methods. She is Co-Director of the Duke Health Humanities Lab, faculty associate with the Trent Center for Bioethics, Humanities and History of Medicine, and a new member of the Duke University Library Council.

Jules Odendahl-James

Duke University

Jules Odendahl-James is an artist/scholar who holds a Ph.D. in Performance Studies from the University of North Carolina-Chapel Hill, and an MFA in Directing from University of Texas Austin. She has taught a range of courses in Theater Studies (from Acting to Performing Science) at Duke University along with serving as the dramaturg or director for eight of Theater Studies' mainstage shows. In addition to her work in theater at Duke and in Durham (most recently as the director of The Fairytale Lives of Russian Girls by Meg Miroshnik at Manbites Dog Theatre) she is now the Program Director for Humanities Advising at Duke. She has published work in several journals such as Theatre Topics, Crime Media Culture, and Theater Survey and in the edited collections The Routledge Companion to Dramaturgy; Woman on Trial: Gender and the Accused Woman in Plays From Ancient Greece to the Contemporary Stage; and Violence in American Popular Culture (forthcoming 2015).