THIS IS YOUR CHANCE TO PRACTICE BEING IN SITUATIONS THAT REQUIRE YOU TO MAKE COMPLEX ETHICAL DECISIONS ABOUT RESEARCH.
How CRISPR let’s us edit our DNA. Jennifer Duodna. Ted Talk Nov. 12 2015
FDA approves first test of CRISPR to correct genetic defect causing sickle cell disease
DOWNLOAD THE SIMULATION
The simulation can be done offline. Just download the HTML file and open with your browser offline.
THIS IS YOUR CHANCE TO REFLECT ON AND DISCUSS THE VARIOUS THEMES, CHALLENGES, AND NEW AWARENESS THAT THE SIMULATION BROUGHT UP FOR YOU.
DEBRIEF INSTRUCTION VIDEO
The debrief questions have been divided into those that are essential and those that are optional. After completing the essential debrief questions, please choose at least 2 additional optional questions to reflect upon. The optional questions have been organized by theme, so you can select those questions that most interest you.
How did the simulation go? Where there decision points that you found particularly challenging? Where there decision points that you found easier than others? Are there any decision outcomes that you feel uneasy about? Or really good about?
Contextual pressures. Depending on the version of the simulation that you ran, you had a specific set of personal and professional circumstances that likely influenced your choices at each decision point. What contextual pressures influenced your decision making? What rationalizations did you use to support your choices? Were you able to distinguish between a rationalization and a morally defensible reason? How so?
Personal values. When making your decision, what personal values did you consider? Were there values in tension as you worked through the simulation? If so, at what decision points? How did you prioritize values? How did you reconcile conflicting values?
Additional perspective. When making decisions about what research agendas to pursue, is it only those of the researcher involved, or does the researcher have a responsibility to understand how others’ values and circumstances might result in a different decision? What missing perspective would you have benefited from during the simulation? And why?
Personal biases. Going through the simulation, did you become aware of any biases you may hold? What were they and how did they influence your choices? In addition to our own beliefs and biases, all people are influenced by psychological biases such as the self-serving bias and the overconfidence bias. How did these psychological factors influence your decision making?
External pressures. External pressures – such as the desire to please colleagues or administrators, to attain tenure or keep a steady paycheck, to retain valued employees – often influence people’s decision making below their level of conscious awareness. What external pressures did you face as the researcher? How did you navigate these pressures? What influence did these pressures have on your decision making and choices?
Stakeholder agendas. Both the donor and the university leadership had specific agendas, which naturally influenced their decision making in service of their goals. What biases did the donor have? What biases did the Dean have? How did their respective agendas influence your choices and decision-making as the researcher?
Funding and research agendas. Whether or not a specific type of research is funded has an impact on society. Who funds research can also have an impact – both on the type of research that is supported as well as on how the research findings are shared. How did the different sources of funding in the simulation affect the research agenda?
Considering impacted populations.Some diseases benefit from higher research funding than others. Advances in scientific research and disease treatments are often unequal; some diseases (and the populations they impact) receive little attention. How did the disease population profile affect your research agenda decisions?
Somatic vs. germline. Is there a moral difference between somatic gene editing (editing of non-reproductive cells) and germline gene editing (edits that are passed onto future generations)? Are there certain cases where germline gene editing is morally acceptable? How did your morals influence your simulation decisions?
Unintended use. While the case being examined in the simulation is using CRISPR for treating disease (which is itself not without controversy), is it the responsibility of researchers to consider how the same technology could be used for more malicious or problematic purposes, like creating bioweapons and designer babies?
CRISPR governance. Is some kind of coordinated effort to harmonize regulation of CRISPR-based therapies, perhaps internationally, required?
Treating vs. eliminating. Is there a moral difference between treating a condition (disease, genetic variation, etc.) and eliminating it? If so, what is the difference? Who should decide whether CRISPR is used to treat or eliminate a condition?
Defining Disability. What is disability? A medically observable deviation from biomedical norms? A marker of social identity that is systematically used to differentiate or discriminate against certain groups of people? How might different definitions of disability have impacted your research decisions?
Imposing treatment. Can society impost treatment on a group of individuals? If so, what is the moral justification for doing so?
Disability and eugenics. What is eugenics? Does seeking to eliminate a disability constitute eugenics? One helpful way to think about this topic is to start with comparing race and disability – how is race different from disability? How is it similar?
Public pressure. How did the external organizational pressures affect your decision to engage with the protesters? What other factors did you consider when choosing whether or not and how to engage with the protestors?
Public disagreement. To what extent are researchers responsible for educating the public about their work? And how should they respond to public disagreement, especially when the disagreement is not always motivated by a clear understanding of the research involved?
* to be completed by those who ran the simulation in a group.
Group dynamics. Reflect on your group’s decision-making process. Were you able to come to a consensus? How did you navigate disagreements? Did you notice anything interesting? What worked well? What could have been improved?
Group values. Was there disagreement in your group about what values to prioritize when making decisions? If so, how did your group navigate those value tensions?
Group biases. In what ways might your group’s choices have been influenced by groupthink or the conformity bias? Groupthink and conformity bias are unconscious influences that describe everyone’s tendency to go along with what the group is thinking, and to take their social and moral cues from the people around them.
THE RESOURCE LIBRARY IS ORGANIZED BY DIFFERENT ETHICAL THEMES AND CONCEPTS. YOU CAN ALSO CHECK OUT THE ETHICS GLOSSARY OF 2- MINUTES VIDEOS COVERING A RELEVANT LIST OF GENERAL ETHICS PRINCIPLES AND BEHAVIORAL ETHICS CONCEPTS.
The Ethics Unwrapped videos are provided by Ethics Unwrapped, and are a free educational resource from the Center for Leadership and Ethics at The University of Texas at Austin.
“As technology advances, how do we avoid losing touch with our values”A World Economic Forum interview with Jennifer Kuzma, December 7, 2016
“How science has shifted our sense of identity” by Nathaniel Comfort, Nature, Oct. 8 2019
“A Real-time look at value-based decision-making” by Francis Collins, NIH Director’s Blog January 16 2020
“Science with Society #SCISO – Values in Science” Global Young Academy March 24, 2022
“GVV: Values” video based on Giving Voice to Values: How to Speak Your Mind When You Know What’s Right by Mary C. Gentile, Yale University Press (2012)
Nobody Stands Nowhere. A short animation exploring the concept of ‘worldview’. Directed, animated and designed by Emily Downe
Moral Illusions Explained (2.5 minutes) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Moral Emotions (prefer this video for learning, but it is longer at 7 min.) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Thinking Fast and Slow: System 1 and System 2 Thinking (5.5 min.) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Self-serving Bias (4.5 min.) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Conformity Bias (5 min) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Obedience to Authority (6 min) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Overconfidence Bias (5 min) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Being Your Best Self: Moral Awareness (7 min) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Being Your Best Self: Moral Decision Making (7 min) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Being Your Best Self: Moral Intent (7 min) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Being Your Best Self: Moral Action (7 min) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Causing Harm (7 min.) by Ethics Unwrapped, Center for Leadership and Ethics, University of Texas at Austin.
Billionaires with Big Ideas are Privatizing American Science by William J. Broad. The New York Times, March 15 2014
Funding the Future by Margaret Cheatham Williams, New York Times.
Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated with Research Productivity. Faheem Farooq, Peter J. Mogayzel, Sophie Lanzkron, et al. JAMA Netw Open. 2020;3(3):e201737
“When Actions Speak Louder than Words: Racism and Sickle Cell Disease” NEJM 2020
“Gene editing: should you be worried?” The Economist, March 17, 2022
Can CRISPR cure sickle cell disease? Nature, August 25 2021
Human genome editing: position paper. World Health Organization, July 12, 2021
“Gene Editing Humanity – Who Decides?” Envision Conference 2019, Princeton University, Nov. 22, 2019
“Bespoke Babies: Genome Editing in Cystic Fibrosis Embryos” Brothers, K.B., Devereaus, M., and R.M. Sade Ann Thorac Surg. 2019 Oct; 108(4): 995–999.
“Gene editing like CRISPR is to important to be left to scientists alone” Natalie Kofler, The Guardian, Oct. 22 2019
“Ethical and Social Issues in Human Germline Editing” John Evans, NAS Sackler Colloquium, Dec. 2019,
“Heritable Human genome editing? Who Decides? Science or Society?” Françoise Baylis, JME Blog, October 11, 2021
“When might human germline editing be justified?” by Jennifer M. Gumer, The Hastings Center Blog, September 26, 2019
“Gene Therapy: A Threat to the Deaf Community?” Teresa Blankmeyer Burke, Impact Ethics March 2 2017
“Gene-editing with CRISPR, Prime Editing, and the Deaf Community” Teresa Blankmeyer Burke, Harvard Legacies of Eugenics Conference, Nov. 16 2021
“The Dark Side of CRISPR” by Sandy Sufian and Rosemary Garland-Thomson, Scientific American, Feb 16, 2021
Continued Conversation: A Case Study on CRISPR-Cas9 and the deaf community from Gallaudet University
Garland-Thomson, Rosemarie. 2020. “How We Got to CRISPR: The Dilemma of Being Human.” Perspectives in Biology and Medicine 63 (1): 28–43.
“Challenges in Disability Ethics” An O’Malley Interview with Dr. Mary Jo Iozzio, 2019
“The movement that inspired the Holocaust” Alexandra Minna Stern and Natalie Lira for TED-Ed, 2022
Reincke, C. M., Bredenoord, A. L., & van Mil, M. H. (2020). From deficit to dialogue in science communication: The dialogue communication model requires additional roles from scientists. EMBO reports, 21(9), e51278.
“Public and Stakeholder Engagement in Developing Human Heritable Genome Editing Polices: What Does it Mean and What Should it Mean?” Iltis A., Hoover, S., and K.R.W. Matthers. Front. Polit. Sci., 22 September 2021
Participatory Action Research at AmeriCorps
Community- Based Participatory Research as Worldview or Instrumental Strategy: Is It Lost in Translation(al) Research? Trickett, E. J. (2011). American Journal of Public Health, 101(8).
ETHICS GLOSSARY (curated from Ethics Unwrapped)
Conflict of Interest
Diffusion of Responsibility
In group/Out group
Obedience to Authority
Subject of Moral Worth
Tangible & Abstract
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