SCi Online Learning Module BETA

 

Thank you for being a beta tester for SCi’s CRISPR simulation online learning module. This is a rudimentary version of what will eventually be freely available on the SCi website to any learner or instructor who would like to use it. All of the major content components of the online learning module are on this temporary webpage: the background materials, instruction videos, the simulation, the debrief questions, and the resource library. Please note, we are producing two original instruction videos about how to use the simulation and navigate the debrief. These films are still in production, so we are simply reading the scripts in the temporary instruction videos provided here.

How to navigate this page

First check out the background materials we have provided and then watch the simulation instruction video. Next, run the simulation. We encourage you to run through the simulation multiple times, if you have the time. After you complete the simulation, watch the debrief instruction video and then reflect on the various debrief questions, which we have organized by theme (i.e. decision making and values, power and equity in research…). The various debrief themes are also tagged with specific resources for you to learn more about each theme. You can also explore the entire resource library to see the complete collection of resources. Once you have finished the online learning module, please click on the link to the beta-tester survey to share your thoughts and feedback with us.

Going through the online learning module and completing the survey should take around an hour. This is not a small amount of time and we are so grateful for your generosity in helping to make this online learning module better! If you have any questions or additional comments please don’t hesitate to email us at sci@hms.harvard.edu

 

1) BACKGROUND MATERIALS

🎬 “How CRISPR lets us edit our DNA“. Jennifer Doudna. Ted Talk Nov. 12 2015

 

📄 “FDA approves first test of CRISPR to correct genetic defect causing sickle cell disease” by Robert Sanders Berkeley News March 30, 2021.

📚 Disease Reference Table

2) SIMULATION INSTRUCTION VIDEO

3) SIMULATION

💡Access the simulation

4) DEBRIEF INSTRUCTION VIDEO


5) DEBRIEF QUESTIONS

Decision Making and Values

1. Ease of deciding. What decisions, if any, were easier than others? How so, and why?

2. Personal values. When making your decision, what personal values did you consider?

3. Conflicting values. 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 handle conflicting values?

4. Whose Values? When making decisions about what research agendas to pursue, whose values should be taken into account? Is it only those of the researcher involved, or does the researcher have a responsibility to understand how others’ values might result in a different decision? And if so, how can we ensure various perspectives are taken into consideration? And how can they be reconciled? 

Resources
1. A Real-time look at value-based decision-making” by Francis Collins, NIH Director’s Blog January 16 2020
https://directorsblog.nih.gov/2020/01/16/a-real-time-look-at-value-based-decision-making/

2. “Science with Society #SCISO – Values in Science” Global Young Academy March 24, 2022
https://www.youtube.com/watch?v=x8nnnBneg_M

*Activity tip: Try writing down your top five personal values (i.e. x, y, z). Compare how your decisions aligned with those values. 

Power and Equity in Research

5. 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?

Resource
Billionaires with Big Ideas are Privatizing American Science by William J. Broad. The New York Times, March 15 2014
https://www.nytimes.com/2014/03/16/science/billionaires-with-big-ideas-are-privatizing-american-science.html

6. Considering impacted populations. Some diseases benefit from higher research funding than others. Advances in scientific research and disease treatments are often unequal with some diseases (and the populations they impact) receiving little attention. How did the disease population profile, existing research funding, and potential accessibility to treatment affect your decisions?

Resources
1. Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated with Research Productivity. Faheem Farooq, MD1; Peter J. Mogayzel, MD, PhD2; Sophie Lanzkron, MD3; et al. JAMA Netw Open. 2020;3(3):e201737
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2763606

2. “When Actions Speak Louder than Words: Racism and Sickle Cell Disease” NEJM 2020
https://www.nejm.org/doi/full/10.1056/NEJMp2022125

CRISPR and Disability

7. 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? 

8. Defining Disability. What is disability? A medically observable deviation from biomedical norms? Or a marker of social identity that is systematically used to discriminate against certain groups of people? What are the advantages and disadvantages of thinking about disability in one way or another?

Resource
“The Dark Side of CRISPR” by Sandy Sufian and Rosemary Garland-Thomson, Scientific American, Feb 16, 2021

9. Imposing treatment. Who should decide whether CRISPR should be used to treat a condition and/or eliminate it? Can a society impost treatment on a group of individuals?

Resources
1. “Gene editing like CRISPR is to important to be left to scientists alone” Natalie Kofler, The Guardian, Oct. 22 2019
https://www.theguardian.com/commentisfree/2019/oct/22/gene-editing-crispr-scientists

2. “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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6931252/

10. Disability and eugenics. What is eugenics, and does seeking to eliminate a disability constitute it? One helpful way to think about this is to start with comparing race and disability–how is race different from disability? How is it similar?

CRISPR Ethics

11. 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)? How did your morals influence your simulation decisions?

Resources
1. “Ethical and Social Issues in Human Germline Editing” John Evans, NAS Sackler Colloquium, Dec. 2019
https://www.youtube.com/watch?v=HBtGdJs6Uw4

2. “Heritable Human genome editing? Who Decides? Science or Society?” Françoise Baylis, JME Blog, October 11, 2021
https://blogs.bmj.com/medical-ethics/2021/10/11/heritable-human-genome-editing-who-decides-science-or-society/

12. 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?

13. CRISPR governance. Are there certain cases where germline editing is morally acceptable? What might those cases be? Is some kind of coordinated effort to harmonize regulations, perhaps internationally, required?

Resources
1. “When might human germline editing be justified?” by Jennifer M. Gumer, The Hastings Center Blog, September 26, 2019
https://www.thehastingscenter.org/when-might-human-germline-editing-be-justified/

2. World Health Organization, Human genome editing: position paper. July 12, 2021
https://www.who.int/publications/i/item/9789240030404\
Behavioral Ethics

14. 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?

15. External pressures. External pressures – such as the desire to please colleagues or administrators, or to attain tenure or keep a steady paycheck, or 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?

16. 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? How so?

Resource
Self-serving Bias (4.5 min.)
https://ethicsunwrapped.utexas.edu/video/self-serving-bias

17. 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?

Public Engagement

18. 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? 

19. Social responsibility. As a member of society, scientific researchers can play an important role in public discourse. What ethical responsibilities do researchers have to engage with the public about their research?

Resource
“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
https://www.frontiersin.org/articles/10.3389/fpos.2021.730869/full
Group Decision-Making

20. Group dynamics. Reflect on your group’s decision-making process. What worked well? What could have been improved? 

21. Navigating disagreements. Was there disagreement in your group about which decisions to make? If so, how did you navigate those disagreements?

22. 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?

*Activity tip: Try writing down your top five personal values. Then as a group share your values and together create a list of your group’s top five values. Compare how your group’s decisions aligned with your group’s values. 

23. 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.

6) RESOURCE LIBRARY

“As technology advances, how do we avoid losing touch with our values” A World Economic Forum interview with Jennifer Kuzma, December 7, 2016
https://www.weforum.org/agenda/2016/12/technology-how-do-we-avoid-losing-values/

“How science has shifted our sense of identity” by Nathaniel Comfort, Nature, Oct. 8 2019
https://www.nature.com/articles/d41586-019-03014-4

A Real-time look at value-based decision-making” by Francis Collins, NIH Director’s Blog January 16 2020
https://directorsblog.nih.gov/2020/01/16/a-real-time-look-at-value-based-decision-making/

“Science with Society #SCISO – Values in Science” Global Young Academy March 24, 2022
https://www.youtube.com/watch?v=x8nnnBneg_M

Causing Harm (7 min.)
https://ethicsunwrapped.utexas.edu/video/causing-harm

Billionaires with Big Ideas are Privatizing American Science by William J. Broad. The New York Times, March 15 2014
https://www.nytimes.com/2014/03/16/science/billionaires-with-big-ideas-are-privatizing-american-science.html

Embedded Video: Funding the Future by Margaret Cheatham Williams, New York Times. https://www.nytimes.com/video/science/100000002711803/funding-the-future-of-science.html

Comparison of US Federal and Foundation Funding of Research for Sickle Cell Disease and Cystic Fibrosis and Factors Associated with Research Productivity. Faheem Farooq, MD1; Peter J. Mogayzel, MD, PhD2; Sophie Lanzkron, MD3; et al. JAMA Netw Open. 2020;3(3):e201737
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2763606

“When Actions Speak Louder than Words: Racism and Sickle Cell Disease” NEJM 2020
https://www.nejm.org/doi/full/10.1056/NEJMp2022125

Nobody Stands Nowhere. A short animation exploring the concept of ‘worldview’. Directed, animated and designed by Emily Downe
https://vimeo.com/548847228

Moral Illusions Explained (2.5 minutes)
https://ethicsunwrapped.utexas.edu/video/moral-illusions-explained

Behavioral Ethics: glossary term (1.5 min.)
https://ethicsunwrapped.utexas.edu/glossary/behavioral-ethics

Moral Emotions: glossary term (2 min.)
​​https://ethicsunwrapped.utexas.edu/glossary/moral-emotions

Moral Emotions (preferred video, 7 min.)
https://ethicsunwrapped.utexas.edu/video/moral-emotions

Thinking Fast and Slow: System 1 and System 2 Thinking (5.5 min.)
https://youtu.be/QmBXhRD0yBQ

Self-serving Bias (4.5 min.)
https://ethicsunwrapped.utexas.edu/video/self-serving-bias

Role Morality (2 min.)
https://ethicsunwrapped.utexas.edu/glossary/role-morality

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.
https://www.embopress.org/doi/full/10.15252/embr.202051278

“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
https://www.frontiersin.org/articles/10.3389/fpos.2021.730869/full

Participatory Action Research at AmeriCorps
https://www.youtube.com/watch?v=vC0PdGfdOo4&t=137s

Trickett, E. J. (2011). Community-Based Participatory Research as Worldview or Instrumental Strategy: Is It Lost in Translation(al) Research? American Journal of Public Health, 101(8).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3134503/

“Gene Therapy: A Threat to the Deaf Community?” Teresa Blankmeyer Burke, Impact Ethics March 2 2017
https://impactethics.ca/2017/03/02/gene-therapy-a-threat-to-the-deaf-community/

“Gene-editing with CRISPR, Prime Editing, and the Deaf Community” Teresa Blankmeyer Burke, Harvard Legacies of Eugenics Conference, Nov. 16 2021
https://youtu.be/wgvZtvaZOL8?t=1332

The Dark Side of CRISPRby Sandy Sufian and Rosemary Garland-Thomson, Scientific American, Feb 16, 2021
https://www.scientificamerican.com/article/the-dark-side-of-crispr/

Continued Conversation: A Case Study on CRISPR-Cas9 and the deaf community from Gallaudet University
http://deafbioethics.weebly.com/a-case-study.html

Garland-Thomson, Rosemarie. 2020. “How We Got to CRISPR: The Dilemma of Being Human.” Perspectives in Biology and Medicine 63 (1): 28–43.
https://doi.org/10.1353/pbm.2020.0002.

“Gene editing: should you be worried?” The Economist, March 17, 2022
https://www.youtube.com/watch?v=F7DpdOHRDR4

Can CRISPR cure sickle cell disease? Nature August 25 2021
https://www.nature.com/articles/d41586-021-02255-6

World Health Organization, Human genome editing: position paper. July 12, 2021
https://www.who.int/publications/i/item/9789240030404\

“Gene Editing Humanity – Who Decides?” Envision Conference 2019, Princeton University, Nov. 22, 2019
https://www.youtube.com/watch?v=DPezdM24bTM

“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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6931252/

“Gene editing like CRISPR is to important to be left to scientists alone” Natalie Kofler, The Guardian, Oct. 22 2019
https://www.theguardian.com/commentisfree/2019/oct/22/gene-editing-crispr-scientists

“Ethical and Social Issues in Human Germline Editing” John Evans, NAS Sackler Colloquium, Dec. 2019,
https://www.youtube.com/watch?v=HBtGdJs6Uw4

“Heritable Human genome editing? Who Decides? Science or Society?” Françoise Baylis, JME Blog, October 11, 2021
https://blogs.bmj.com/medical-ethics/2021/10/11/heritable-human-genome-editing-who-decides-science-or-society/

“When might human germline editing be justified?” by Jennifer M. Gumer, The Hastings Center Blog, September 26, 2019
https://www.thehastingscenter.org/when-might-human-germline-editing-be-justified/

7) BETA-TESTER SURVEY

📋 Access the survey