Curriculum

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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 responsibilities, impact the conduct of scientific research

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Overview

Session 1: Course Introduction and History of Genetics

Session 2: Introduction to Bioethics, Social Responsibility, and Community Engagement

Session 3: Race, Ancestry, and Genetics (Pt 1)

Session 4: Race, Ancestry, and Genetics (Pt 2)

Session 5: Behavior and Genetic Determinism

Session 6: Sex and Gender; Ability

Session 7: Screening and Selection

Session 8: Identification and Privacy

Session 9: Genetics in the Archives

Session 10: Self Reflection and Action

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Session 1: Course Introduction and History of Genetics

Learning objectives

• Define positionality, intersectionality, and privilege
• Understand how societal biases intersected with genetic research and medicine through the 20th century

Slides

Activities

• Students and instructors co-create classroom norms
• “Who’s in the room?” exercise: students anonymously describe identities they hold and reflect on the collection of identities in the classroom
• Privilege awareness exercise: instructors read aloud various social and economic privilege statements and students privately note which statements they identify with
• Reflection on positionality: students journal about which identities they hold, and how their identities impact the way students interact with the world

Pre-class readings

• None

Supplemental readings

• Stanford Eugenics History Project
• Eugenic Nation: Faults and Frontiers of Better Breeding in Modern America by A.M. Stern (esp. pages 3-11, 16-18)
• She Has Her Mother’s Laugh: The Powers, Perversions, And Potential Of Heredity by C. Zimmer (esp. Ch. 1-2)
• Linneaus and Race
• Belly of the Beast: California’s dark history of forced sterilizations. by S. Jindia, The Guardian
• The long history of forced sterilization of Latinas

Session 2: Introduction to Bioethics, Social Responsibility, and Community Engagement

Learning objectives

• Describe the principles of beneficence, non-maleficence, autonomy, and justice, and apply them to case studies
• Identify shortcomings of these four principles
• Understand the benefits of social responsibility and community-engaged research
• Identify key stakeholders and conflicts of stakeholdership in community-engaged research

Slides

• Dr. Martschenko lecture

Activities

• Analysis of Havasupai Tribe v. the Arizona Board of Regents: students identify stakeholders and discuss where and how conflicts arose between researchers and the Havasupai Tribe
• Role-play exercise: students are assigned roles as community members or researchers and co-design a research study using the principles of community-based participatory research

Pre-class readings

• Science Under the Scope by Sophie Wang
• Should we make a fuss? A case for social responsibility in science by J. Beckwith and F. Huang, Nature Biotechnology

Supplemental readings

• The Ethical Challenges of Socially Responsible Science by D.B. Resnik and K.C. Elliott, Science
• How IRBs View and Make Decisions About Social Risks by R.L. Klitzman, Journal of Empirical Research on Human Research Ethics
• Scientists Must Consider the Risk of Racist Misappropriation of Research by S. Trejo, R. Wedow, and D.O. Martschenko, Scientific American
• A framework for enhancing ethical genomic research with Indigenous communities by K.G. Claw et al., Nature Communications
• Addressing underrepresentation in genomics research through community engagement by A.A. Lemke et al., American Journal of Human Genetics

Session 3: Race, Ancestry, Identity, and Genetics Pt 1

Learning objectives

• Distinguish between race, ethnicity, ancestry, and nationality
• Differentiate between social identity and genetic ancestry, and in particular, understand how social identity is (often) discretized, while genetic ancestry is a continuum
• Recall historical and societal issues that impact modern mistrust of medicine across certain racial and ethnic groups
• Understand how social determinants of health impact genetic medicine and research

Slides

Activities

• Word cloud exercise: students anonymously define race, ethnicity, ancestry, and nationality, and reflect on the resulting word clouds
• Analysis of race and ancestry in healthcare: students discuss case examples and identify who benefitted, who was harmed, and how society was impacted more broadly
• Henrietta Lacks: video 1, video 2
• Forced sterilization: video 1, video 2
• Addressing Reproductive Healthcare Disparities through Equitable Carrier Screening: Medical Racism and Genetic Discrimination in United States’ History Highlights the Needs for Change in Obstetrical Genetics Care by A. Arjunan et al., Societies
• Kidney dialysis treatment: Robert Phillips' story

Pre-class readings

• None

Supplemental readings

• What is ancestry? by I. Mathieson and A. Scally, PLOS Genetics
• Using Population Descriptors in Genetics and Genomics Research: A New Framework for an Evolving Field, National Academies Press

Session 4: Race, Ancestry, Identity, and Genetics Pt 2

Learning objectives

• Describe societal perceptions of social identity (race, ethnicity, and nationality) and genetic ancestry, including racial essentialism
• Examine the consequences that these societal perceptions of social identity and genetic ancestry have on individuals and society broadly
• Critique scientific uses of social identity (race, ethnicity, and nationality) and genetic ancestry

Slides

Activities

• Analysis of popular media: students read a news article on genetic ancestry testing “surprises”, identify perceptions surrounding race and ancestry, and contrast genetic ancestry with social identities
• Analysis of scientific research: students read an academic paper, identify how the authors defined “populations” for their analysis, and discuss the impact on the interpretation of the paper
• Analysis of extremist views: students read a news article on white supremacist views of genetics and ancestry, identify misconceptions about race and ancestry, and discuss researchers’ responsibilities to mitigate harm in such contexts

Pre-class assignment

• The Problem with Race-Based Medicine by D. Roberts

Supplemental readings

• Reading tea leaves? Polygenic scores and differences in traits among groups by G.Coop, arXiv

Session 5: Behavior and Genetic Determinism

Learning objectives

• Recognize how genetics research can be mis-used to justify genetic determinist viewpoints and the associated harms
• Describe current efforts by the research community to combat the weaponization of research, and articulate strategies that individual scientists can employ

Slides

Activities

• Analysis of genetic determinism: students read two articles on the genetic basis of educational attainment, athleticism, or sexuality, and discuss societal implications of this research
• Educational attainment
• The Bell Curve by R. Herrnstein and C. Murray, pages 320-322
• The Genetic Lottery: Why DNA Matters for Social Equality by P. Harden, pages 7-10
• Athleticism
• Black runners 'have speed genes' by J. Arlidge, The Guardian
• Why Kenyans Make Such Great Runners: A Story of Genes and Cultures by M. Fisher, The Atlantic
• Sexuality
• A Linkage Between DNA Markers on the X Chromosome and Male Sexual Orientation by D.H. Hamer et al., Science
• Large-scale GWAS reveals insights into the genetic architecture of same-sex sexual behavior by A. Ganna et al., Science
• Analysis of FAQ utility: students read a sociobehavioral genetics paper, brainstorm questions, and evaluate whether their questions were successfully answered in the FAQ accompanying the paper
• Reflection on social responsibility: students discuss whether researchers have a responsibility to combat the harms of genetic determinism and brainstorm potential actions

Pre-class readings

• Why Biology Is Not Destiny by J. Riskin and M.W. Feldman, The New York Review of Books (2022)

Supplemental readings

• ‘Why Biology Is Not Destiny’: An Exchange: K.P. Harden response to Feldman & Riskin, followed by J. Riskin and M.W. reply to Harden
• “The elephant in the room”: social responsibility in the production of sociogenomics research by D.O. Martschenko, Biosocieties
• FoGS provides a public FAQ repository for social and behavioral genomic discoveries. by D.O. Martschenko et al., Nature Genetics
• Perspectives on the complex genetics of same-sex sexual behavior

Session 6: Sex and Gender; Ability

Learning objectives

• Distinguish the relationship between biological sex, gender identity, and sexuality through discussion of the role genetics plays in these concepts
• Examine the medicalization of identities and how it impacts society, medicine, and research
• Critique genetics studies and practices from a disability-rights perspective

Slides

Activities

• Word cloud exercise: students anonymously define sex, gender, and sexuality, and reflect on the resulting word clouds
• Analysis of sex, gender, and sexuality in research: students read articles on biological sex, gender, or sexuality and discuss the implications for science and society
• Biological sex: discuss how current research defines biological sex
• Sex redefined by C. Ainsworth, Nature
• Gender: discuss how researchers should engage with the definitions of biological sex and gender identity
• Sex and gender analysis improves science and engineering by C. Tannenbaum et al., Nature (Box 1)
• What is gendered innovations?
• Chronic pain: analyzing how sex and gender intersect
• Sexuality: discuss how research into the genetics of sexuality impacts the definition of sexuality
• Controversial ‘gay gene’ app provokes fears of a genetic Wild West by A. Maxmen, Nature
• Role-play exercise: students role-play as a governing sports body conducting “sex verification” tests for athletes and discuss the challenges in making these decisions and their impacts on athletes
• Adapted from pged.org

Pre-class readings

• If Not Now, Then When? Taking Disability Seriously in Bioethics by D. Mukherjee, P.S. Tarsney, and K.L. Kirschner, Hastings Center Report

Supplemental readings

• Adrienne Asch (1946–2013) by D. Roberts, Nature
• Gender-related variables for health research by M.W. Nielsen et al., Biology of Sex Differences
• ‘I am not a broken version of normal’ — autistic people argue for a stronger voice in research by E. Rodriguez Mega, Nature
• The last children of Down syndrome by S. Zhang, The Atlantic

Session 7: Screening and Selection

Learning objectives

• Understand the role of eugenics in the development of the prenatal genetic testing field
• Summarize the current landscape of prenatal genetic testing, carrier screening, embryo selection and gene editing
• Extrapolate the current and future implications of the currently available technologies with a focus on reproductive choice and disability rights
• Evaluate how ethics can help guide society towards ethical application of these technologies

Slides

Activities

• Reflection on eugenics: students draw connections between the eugenics movement and reproductive health
• Analysis of current technologies: students discuss individual motivations and broader ethical implications at stake in contemporary case studies of prenatal screening
• Analysis of potential future technologies: students evaluate pre-implantation genetic testing and germline genetic engineering through the lens of each of the four principles of bioethics

Pre-class readings

• Does gene editing have a future in reproductive medicine? by E. Kirksey, The New York Times
• FDA approves most expensive drug ever, a $3.5 million-per-dose gene therapy for hemophilia B, CBS News

Supplemental readings

• Medical advances and ethical dilemmas in human genome editing by P. Foong
• Problems with Using Polygenic Scores to Select Embryos by P. Turley et al., New England Journal of Medicine
• Experts weigh medical advances in gene-editing with ethical dilemmas by R. Stein, NPR
• FDA Approves Gene Therapy With $2.1M Price Tag for Spinal Muscular Atrophy in Pediatric Patients by J. Rosenberg, American Journal of Managed Care
• A New Era of Designer Babies May Be Based on Overhyped Science by L. Hercher, Scientific American

Session 8: Identification and Privacy

Learning objectives

• Analyze the role that government, private, and public databases play in the application of forensic genetics in the criminal justice system globally
• Examine risks and benefits of identification and privacy from private and public entities

Slides

Activities

• Analysis of forensic genetics: students read case studies on the usage of forensic genetics and assess the benefits and harms of using genetic information in each instance
• Congress should support access to post-conviction DNA testing by K. Bloodsworth, The Hill
• The untold story of how the Golden State Killer was found: A covert operation and private DNA by P. St. John, The Los Angeles Times
• A woman whose rape DNA led to her arrest sues the city of San Francisco, The Associated Press
• Scientists Say DNA Can Reunite Separated Migrant Families by W. Beckwith, AAAS
• China Is Collecting DNA From Tens of Millions of Men and Boys, Using U.S. Equipment by S. Wee, The New York Times
• Analysis of data policies: students read privacy and consent policies for various consumer and research databases, and evaluate how well the benefits and harms are communicated to participants
• 23andMe
• UK Biobank
• Ancestry DNA
• H3Africa
• Reflection on social responsibility: students brainstorm potential harms posed by participants in genetic databases, and the social responsibilities of data stewards

Pre-class readings

• Data policies from 23andMe, UK Biobank, Ancestry, and H3Africa linked above

Supplemental readings

• Re-envisioning community genetics: community empowerment in preventive genomics by H. Wand et al., Journal of Community Genetics
• Sociotechnical safeguards for genomic data privacy by Z. Wan et al., Nature Reviews Genetics
• Identity inference of genomic data using long-range familial searches by Y. Erlich et al., Science
• Identifying Personal Genomes by Surname Inference by M. Gymrek, Science
• Inadvertent human genomic bycatch and intentional capture raise beneficial applications and ethical concerns with environmental DNA by L. Whitmore et al., Nature Ecology & Evolution
• Reconstruction of the personal information from human genome reads in gut metagenome sequencing data by Y. Tomofuji et al., Nature Microbiology

Session 9: Genetics in the Archives

Learning objectives

• Understand how individuals acted to counter the misuse of genetics research to further racist and sexist ideologies
• Connect historical examples of ethical problems to the modern-day case studies presented in this course
• Analyze how scientists’ ideologies impacted their interpretation of science

Lesson Plan

• Stanford affiliates can access the primary source documents used for this lesson by requesting these boxes from Stanford University Archives
• Additional collections located in California can be browsed at the Online Archive of California
• Information on local primary source archives and digital collections elsewhere in the United States can be found here

Activities

• Analysis of primary source documents curated around 5 different topics:
• Activism around the proposed Center for the Study and Reduction of Violence
• Forced sterilization discussions in Chicano-focused journalism
• Discourse of race, genetics, and IQ throughout the 20th century
• Scientific activism and social responsibility in the 1970s
• Eugenics and anti-miscegenation

Pre-class readings

• Activism around the proposed Center for the Study and Reduction of Violence: ASHG Facing Our History: Genetic basis for criminality (highlighted green)
• Forced sterilization discussions in Chicano-focused journalism: ASHG Facing Our History: Sterilization laws (highlighted pink)
• Discourse of race, genetics, and IQ throughout the 20th century: ASHG Facing Our History: Genetic Basis for Intelligence Differences Between Racialized Groups (highlighted yellow)
• Scientific activism and social responsibility in the 1970s: The Cultural Politics of the Sociobiology Debate (highlighted regions up to page 574)
• Eugenics and anti-miscegenation: The Long History of Forced Sterilization of Latinas

Session 10: Self-Reflection and Action

Learning objectives

• Evaluate your own positionality and its relationship to your work as a scientist
• Construct and reflect on viewpoints that recognise and relate to different positionalities
• Ideate ways to make existing academic structures more equitable, inclusive, and just; create actionable goals to do so

Slides

Activities

• Q&A on scientific activism with Professor Marc Feldman
• Reflection on the course: students note down their main takeaways from each class session on post-it notes around the classroom
• Reflection on reflexivity: students revisit their reflection on positionality and journal about how their positionality impacts their work as a researcher
• Reflection on post-course action: students independently brainstorm their “big dream” for science and identify actions they can take towards this goal over different timescales and different personal/professional spheres

Pre-class readings

• Echoes of the Past: Hereditarianism and A Troublesome Inheritance by M. Feldman, PLOS Genetics

Supplemental readings

• Reflexivity, an essential component for all research? by L. Finlay, British Journal of Occupational Therapy