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Office of Institutional Effectiveness

Narrative Resources
for IRB Member Education

Narrative Resources
for IRB Member Education

Office of Institutional Effectiveness NAVIGATION

What can I expect to find here?

These resources are developed in conjunction with the “Stories Matter”: Use of Narrative in IRB Member Education program workshop at the PRIM&R Advancing Ethical Research Conference. During these workshops, we have been exploring the use of different types of narrative resources to enhance research ethics education for IRB Members and other stakeholders. We have found that use of narrative resources in this setting:

  • Induces co-learning and more engaged learning experiences
  • Reduces the sense of distance between ethicist/reviewer and research participant
  • Leads to more effective identification of potential risks and harms in research

How do I use these resources?

These resources are used in a variety of ways:

  • They can be embedded in existing IRB Member or researcher training.
  • They can be used as supplements to standardized programs, such as CITI Training.
  • They can be shared with IRB members through meeting agendas or email distribution lists.
  • Many of these resources are very effectively used as bite-sized educational segments shared at the introduction of IRB Meetings.

How can I contribute?

This resource is curated through a joint partnership between Research & Compliance, Lindenwood University and Gianna McMillan (MA), Bioethics Institute at Loyola Marymount University. Please contact Michael Leary or Gianna McMillan with questions or contributions.

 


Resources

Journalism

Date Author Title
April, 1994 Keith Schneider "Cold War Radiation Test on Humans to Undergo Congressional Review"
November, 1999 Sheryl Gay Stolberg "The Biotech Death of Jesse Gelsinger"
April, 2010 Amy Harmon "Indian Tribe Wins Fight to Limit Research of Its DNA"
September, 2010 Carl Elliott "The Deadly Corruption of Clinical Trials"
December, 2012 Raffi Khatchadourian "High Anxiety: LSD In The Cold War"
December, 2012 Judy Stone "A Clinical Trial and Suicide Leave Many Questions" (Part 1, 2, 3, 4)
March, 2013 Helen Epstein "Lead Poisoning: The Ignored Scandal"
August, 2013 Rosalind Early "Decades Later, Baby Tooth Survey Legacy Lives On"
November, 2013 Amy Dockser Marcus "Trials: A Desperate Fight to Save Kids & Change Science"
July, 2014 Carl Elliott "The Best-Selling, Billion-Dollar Pills Tested on Homeless People"
May, 2016 Sarah Zhang "Scientists are Just as Confused About the Ethics of Big-Data Research as You"
June, 2016 Benedict Carey "An N.Y.U. Study Gone Wrong, And a Top Researcher Dismissed"
February, 2017 Sushma Subramanian "Worse Than Tuskegee"
May, 2017 Kate Murphy "Some Social Scientists are Tired of Asking Permission"
May. 2017 AP "Generations Later, the Effects of the Tuskegee Syphilis Study Linger"
January, 2018 Adam Rogers "Scientists Hate the NIH's New Rules for Experimenting on Humans"
May, 2018 Mya Roberson "Finding Myself in Research"
June, 2018  Gina Kolata  "The Ideal Subjects for a Salt Study? Maybe Prisoners
January, 2019 Jesse Singal "Is a Portland Professor Being Railroaded by His University for Criticizing Social-Justice Research"
February, 2019 Michele Munz "The Heartbreak and Heroism of Being the X-Men in Alzheimer's Disease"
December, 2019 Shahla Farzan "Volunteers Get Paid to Take a 'Strange, Twisted Vacation' at St. Louis' Hotel Influenza"
January, 2020 Helen Branswell "'Against all Odds': The inside story of how scientists across three continents produced an Ebola vaccine"
December, 2019 Dyani Lewis "Australian biobank repatriates hundreds of 'legacy' Indigenous blood samples"

Cinema and TV

Year Director(s) Title/Series
1961 Stanley Kramer Judgment at Nuremberg
1975 Charles Dubin The Tenth Level
1990 Penny Marshall Awakenings
1993 Roger Spottiswoode And the Band Played On
1996 Michael Apted Extreme Measures
1997 Joseph Sargent Miss Ever's Boys
1999 Roland Richter After the Truth
2001 Mike Nichols Wit
2004 Various Your Life in Their Hands (2004 Series)
2005 Fernando Meirelles The Constant Gardener
2010 Mark Romanek Never Let Me Go
2015 Michael Almereyda Experimenter
2015 Kyle Alvarez The Stanford Prison Experiment
2017 John Hoffman First in Human: The Story of Building 10
2018 Bernard Friedman N of 1
2019 Buzzfeed I Survived The Holocaust Twin Experiments
2019 Tim Wardle Three Identical Strangers
2019 Todd Haynes Dark Waters

Fiction and Non-Fiction

Year Author Title
1886 Leo Tolstoy The Death of Ivan Illyich
1966 Sawako Aryioshi The Doctor's Wife
1999 Allen M. Hornblum Acres of Skin: Human Experiments at Holmesburg Prison
2003   Being Human, Readings from the President's Council on Bioethics
2004 David Gilbert The Normals
2007 Allen M. Hornblum Sentenced to Science: One Black Man's Story of Imprisonment in America
2009 Ben Bova The Immortality Factor
2011 Rebecca Skloot The Immortal Life of Henrietta Lacks
2011 Ann Patchett State of Wonder: A Novel
2014 Matthew Thomas We Are Not Ourselves
2014 Karen M. Masterson The Malaria Project
2016 Luke Dittrich Patient H.M. - A Story of Memory, Madness, and Family Secrets
2016 Mary E. Williams A Series of Catastrophes and Miracles: A True Story of Love, Science, and Cancer
2017 Meredith Wadman The Vaccine Race - Science, Politics, and the Human Costs of Defeating Disease
2017 William Rosen Miracle Cure: The Creation of Antibiotics and the Birth of Modern Medicine

Oral History and Podcasts

The following is a selection of items from the PRIM&R People & Perspectives Project and the More Than Meets the IRB Podcast

  • From the PRIM&R People & Perspectives Project:
Time Guest Topic
5:17 Charles McCarthy, PhD The Creation of the National Commission
10:39 Tom Beauchamp, PhD Who Wrote the Belmont Report?
4:07 Charles McCarthy, PhD The Surprising Historical Significance of the Belmont Report
6:03 Charles McCarthy, PhD Translating the National Commission Work Into Regulations
3:33 LeRoy Walters, PhD Ethical Contributions to the National Commission
3:39 Robert Levine, MD Beneficence as a Universal Ethical Principle
3:46 Tom Beauchamp, PhD Reflections on "Respect for Persons"
4:29 Robert Levine, MD Respect for Persons as an American Concept
3:51 Robert Levine, MD Justice
4:47 LeRoy Walters, PhD Three or Four Ethical Principles
7:35 Robert Veatch, PhD The Belmont Report and Beneficence vs. Non-Maleficence
4:12 Lisa M. Lee, PhD MS The Belmont Report and New Challenges in Research
5:18 Caroline Kithinji, BS MS Over-Researched Communities
2:54 Christy Rentmeester, PhD Resisting Groupthink
2:14 Leonard Glantz, JD Efficiency is Not a Moral Concept
1:22 Bruce Gordon, MD What I Love About IRB Work
3:16 Rebecca Dresser, JD The Heart of Medicine
6:22 Jeremy Sugarman, MD The Duke Closure
  • More Than Meets the IRB:

Coming soon...