Curriculum (2022)

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Syllabus

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Learning goals

1. Connect the historical context of genetics research to its modern-day practice
2. Evaluate the social and ethical implications of genetics research
3. Analyze how societal norms and structures, along with personal identities, biases, and responsibility, impact the conduct of scientific research

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Overview

Session 1: Introduction to Bioethics and Society

Session 2. History of Heredity

Session 3. Introduction to Human Genetic Data

Session 4. Race, Ancestry, Identity, and Genetics

Session 5. Reproductive Genetics; Positionality

Session 6. Criminal Justice; Action

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Session 1: Introduction to Bioethics and Society

Learning objectives

• Describe personal identities and use this to co-create ground norms for discussions throughout the course
• Evaluate different ethical frameworks by applying the four principles of bioethics to case studies
• Identify the ways in which societal structures and norms impact science

Pre-class assignment

• Read: a short primer on intersectionality, positionality, and privilege & the four principles of medical ethics
• Read: the last section of Macklin 2003, "Applying the four principles" ('Genetic manipulation to produce germline transmissible genetic enhancement', beginning at the bottom of p. 278)

In-class readings

• Abridged version of Science Under the Scope by Sophie Wang

Optional readings

• Gillon 2003, "Four scenarios -- the section titled 'Genetic manipulation to produce germline transmissible genetic enhancement' is relevant.
• Harris 2003, "In praise of unprincipled ethics" -- Case II (beginning p. 306) is relevant.
• Callahan 2003, "Principlism and communitarianism"
• Campbell 2003, "The virtues (and vices) of the four principles"
• Greely 2019, "He Jiankui, embryo editing, CCR5, the London patient, and jumping to conclusions"

Session 1 Slides »

Session 2. History of Heredity

Learning objectives

• Recall how the study of heredity and genetics has developed over time
• Understand how societal biases intersected with knowledge of heredity/genetics to justify early scientific thought and 19th/20th century eugenics movements
• Analyze how historical context impacts modern-day science through the specific examples of eugenics and genome editing

Pre-class assignment

• Read: highlighted sections on pages 3-11, 16-18 of Eugenic Nation by Alexandra Minna Stern
• Read: highlighted sections on pages 4-10 of Ch. 1, She Has Her Mother's Laugh by Carl Zimmer
• Read: highlighted sections on pages 14-19, 23-30 of Ch. 2, She Has Her Mother's Laugh by Carl Zimmer

Session 2 Slides »

Session 3. Introduction to Human Genetic Data

Learning objectives

• Identify limitations and concerns around the collection, use, and analysis of human genetic data
• Develop an understanding of the current landscape of genomic data stewardship
• Identify key stakeholders and conflicts of stakeholdership in the collection, use, and analysis of human genetic data

Pre-class assignment

What does the landscape of attitudes towards genetics look like around you? Ask 2-5 people in your life (friends, family, colleagues, community members, etc.) about their impressions of genetic studies and/or direct-to-consumer genetic testing. Some example questions:

• Have you / do you plan on using a direct-to-consumer genetic testing service like Ancestry or 23&Me? Why or why not?
• How would you feel about being part of a genetic research study? What questions would you have?
• What questions or concerns do you have about genetic testing / genetic data?

In-class readings

• 23andMe : note that the additional links at the bottom of the page may also be helpful, such as the test info
• UK Biobank
• Ancestry
• H3Africa

Optional readings

The Havasupai Tribe vs ASU

• Nanibaa’ Garrison. Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research. Sci Technol Human Values. 2012
• Robyn Sterling. Genetic Research among the Havasupai: A Cautionary Tale. AMA Journal of Ethics. 2012
• Havasupai Tribe v Arizona Board of Regents, 220 Ariz. 214, 222 (2008)

More on Indigenous Communities and Genetic Data

• Claw et al. Perspectives on Genetic Research: Results From a Survey of Navajo Community Members. Front. Genet., 02 December 2021
• Claw et al. A framework for enhancing ethical genomic research with Indigenous communities. Nat Comm. 2018

General Overview of Understanding Ownership and Privacy of Data

• Segert. Understanding Ownership and Privacy of Genetic Data. 28 November 2018.

Session 3 Slides »

Session 4. Race, Ancestry, Identity, and Genetics

Learning objectives

• Examine how genetic ancestry and race are used in current genetic studies
• Evaluate inconsistencies and uncertainties in how race, ethnicity, and ancestry are defined and used in genetics
• Assess the risks and benefits of using genetic ancestry and race in current genetic studies and identify how to mitigate risks

Pre-class assignment

• Read: Harmon 2018, "Why White Supremacists Are Chugging Milk (and Why Geneticists Are Alarmed)"
• Read: Lewis et al. 2022, "Getting Genetic Ancestry Right for Science and Society"

Optional readings

• Davis, L. K. (n.d.). Human Genetics Needs an Antiracism Plan. Scientific American.
• Duello, T. M., Rivedal, S., Wickland, C., & Weller, A. (2021). Race and genetics versus ‘race’ in genetics: A systematic review of the use of African ancestry in genetic studies. Evolution, Medicine, and Public Health, 9(1), 232–245.
• Popejoy, A. B. (2021). Too many scientists still say Caucasian. Nature, 596(7873), 463–463.
• Roth, W. D., & Ivemark, B. (2018). Genetic Options: The Impact of Genetic Ancestry Testing on Consumers’ Racial and Ethnic Identities. American Journal of Sociology, 124(1), 150–184.
• Roth, W. D., Yaylacı, Ş., Jaffe, K., & Richardson, L. (2020). Do genetic ancestry tests increase racial essentialism? Findings from a randomized controlled trial. PLOS ONE, 15(1), e0227399.
• TallBear, K., & Bolnick, D. A. (n.d.). “Native American DNA” Tests: What are the Risks to Tribes?
• Vilhjálmsson, B. J., & Nordborg, M. (2013). The nature of confounding in genome-wide association studies. Nature Reviews Genetics, 14(1), 1–2.

Session 4 Slides »

Session 5. Reproductive Genetics; Positionality

Learning objectives

Ethical Issues in Reproductive Genetics

• Understand the role of eugenics in the development of the prenatal genetic testing field
• Summarize the current landscape of prenatal genetic testing, carrier screening, and embryo selection
• Extrapolate the future implications of the currently available technologies
• Evaluate how principle-based ethics can help guide society towards ethical application of these technologies

Positionality

• Evaluate your own positionality and its relationship to your work as a scientist

Pre-class assignment

• Read: "The Last Children of Down Syndrome" by Sarah Zhang

Optional readings

• Parens and Asch 2003. "Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations".
• Vaimberg et al 2021. "Project Inclusive Genetics: Exploring the impact of patient-centered counseling training on physical disability bias in the prenatal setting".
• Hercher 2021. "A New Era of Designer Babies May Be Based on Overhyped Science".
• Turley et al 2021. "Problems with Using Polygenic Scores to Select Embryos".

Course run

Session 5 Slides »

Session 6. Criminal Justice; Ideation and Action

Learning objectives

• Identify the role of genetics in the criminal justice system via forensic applications and genetic databases
• Design potential safeguards of current and future uses of genetics in the criminal justice system
• Evaluate scientists’ role and responsibilities regarding applications of genetics in the criminal justice system

• Ideate ways to make existing academic structures more equitable, inclusive, and just, and will create actionable goals to do so

Pre-class assignment

• Survey https://stanfordmedicine.qualtrics.com/jfe/form/SV_cGzeK8dR3N93aqq

In-class readings

• Congress should support access to post-conviction DNA testing. By Kirk Bloodswirth (07/29/15)
• The untold story of how the Golden State Killer was found: A covert operation and private DNA. By Paige St. John (12/8/2020)
• Opinion: After a rape survivor’s arrest, it’s time to rethink genetic databases. By Jennifer King (02/17/2022)
• Scientists Say DNA Can Reunite Separated Migrant Families. By Walter Beckwith 05/28/2021)

In-class Activity

Worksheet for ideation activity

• Garcia 2018. DNA Evidence Exonerates a Man of Murder After 20 Years in Prison
• Sero et al 2019. Facial recognition from DNA using face-to-DNA classifiers.
• Miller 2010. Familial DNA Testing Scores a Win in Serial Killer Case
• Oldt and Kanthaswamy 2020. Expanded CODIS STR allele frequencies – Evidence for the irrelevance of race-based DNA databases

Session 6 Slides »