Session 1: Course Introduction and History of Genetics
Session 2: Introduction to Bioethics, Social Responsibility, and Community Engagement
Session 3 & 4: Race, Ancestry, and Genetics
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
Given the difficult subject matter, we began the first class by co-creating ground norms and working to establish an environment where students could feel comfortable being open, honest, and vulnerable in class discussions. We additionally asked students to describe their own identities, and introduced the concepts of positionality, intersectionality, and privilege such that we could revisit them throughout the course.
Deconstructing the myth of scientific objectivity and understanding the influence of society on science is easiest to understand in the past. We therefore started our course with a session on the history of genetics to prime students to interrogate the relationship between science and society in the present day. We began by exploring how the conceptual origins of genetics developed during the Classical Era, and later, how Christian missionizing and colonialism contributed to modern understandings of race through the practice of hereditary slavery. We discussed how the 20th century eugenics movement was sparked by Darwin's ideas about natural selection and further fueled by xenophobic concerns about immigration, legitimized by mathematicians and scientists, and systematically spread by capitalist robber barons. To emphasize how recent and personal this history is, we focused on people and places involved in the eugenics movement that were local to Stanford and California (e.g. by discussing campus buildings named after eugenicists). We concluded by acknowledging the lasting legacy of eugenics through several present-day examples of forced sterilizations, including the California carceral system until 2014, U.S. immigration detention centers in 2020, and the Uyghur ethnic minority in China.
Following our discussion of the historical injustices perpetrated by genetics research, we then delved into a session on bioethics and its origins as a response to egregious research abuses. Students were introduced to key materials that guide ethical research (e.g., Nuremberg Code, Helsinki Declaration, Belmont Report, Common Rule) and learned about the four foundational ethical principles of bioethics: justice, beneficence, autonomy, nonmaleficence. They were also made aware of the limitations of these frameworks in terms of evaluating broader societal implications. We asked students to interrogate the social responsibilities of researchers to society at large (i.e. social responsibility), communities from which data is collected with or from, and any other stakeholdersentities that might be impacted by the research process (i.e. stakeholders). We followed up with a a didactic lecture on community-based participatory research with an activity where students role-played co-designing a research study as various members of the community or research institution.
After students developed a foundation for the history of human genetics and bioethics, we turned to examining the relationship between genetics and society in the present day. We began by spending two weeks discussing the intersection between race, ancestry, identity, and genetics, given how essential this concept is for understanding the ethical and societal implications of human genetics research. In the first week, we started by asking students to consider how they themselves defined race, ethnicity, ancestry, and nationality. After acknowledging how ambiguous, overlapping, and deeply personal these terms can be, we explicitly defined “genetic ancestry” via a short lecture on human genetic variation, emphasizing the distinction between genetic ancestry, genetic similarity, and race. We then explored the consequences of the use and misuse of these concepts in three settings: medicine, scientific research, and society at large. In small groups, students examined case studies and discussed how historical injustices have contributed to the lingering mistrust of science in certain communities (e.g. the Tuskegee Study of Untreated Syphilis and its impact on the Black community in the U.S.), as well as how social determinants of health can lead to racial health disparities that are often incorrectly perceived as biologically determined. We used this foundation to ask students to critically evaluate perceptions of race and ancestry present in both a scientific paper and a popular news article, enabling them to grapple with misperceptions about race and genetics that may arise both within science and in society more broadly.
We next leveraged the lessons on race and ancestry to explore two particular beliefs about genetics: genetic determinism, the belief that an individual’s traits and outcomes are primarily determined by their genetic makeup, and racial essentialism, the belief that specific unchangeable traits define distinct racial groups. In order to emphasize the harms associated with these beliefs, we began the class by defining these terms, and exploring the role they played in a white supremacist’s massacre of ten Black people in Buffalo, New York in 2022. Through case studies, students then examined how the concept of genetic determinism can manifest in contemporary genetics research and discussed its consequences for individuals and society. To highlight the agency of individual scientists, we ended the class by revisiting the concept of social responsibility and reflecting on what can be done to avert genetic determinist interpretations of research. Specifically, students first evaluated methods that researchers use to combat misinterpretation of social and behavioral genomics research (e.g., FAQs), and next reflected on what researchers could do to combat the social harms of research. With this class marking the halfway point of the course, this exercise allowed students to begin contemplating their own agency in reducing research harm.
We continued our examination of the relationship between genetics and identity by exploring the medicalization of identities, specifically gender, sexuality, and (dis)ability. We started by distinguishing the biological underpinnings of sex from the sociological concept of gender. To enable students to fully engage with the complex social implications embedded in these concepts, we adapted an exercise from pgEd wherein students were asked to role-play as a governing sports body conducting “sex verification” tests for athletes. We then switched to examining the construction of disability in genetics research and medical care. Because lived experiences are indispensable for contextualizing and prioritizing research, Ronit Mazzoni (MS, CGC), a genetic counselor who is Blind and specializes in fertility, gave a guest lecture and Q&A.
After students built an understanding of the intersection between gender, disability, and genetics, we transitioned to discussing ethical concerns in reproductive genetics. We situated these discussions in light of the restriction on abortion via the 2022 Supreme Court decision Dobbs v Jackson Women’s Health Organization. To encourage students to synthesize concepts from different classes, we first asked students to recall what they had learned about eugenics and forced sterilization, and connect it to the classes on race, gender, and disability. For the remainder of the class, students evaluated risks, benefits, and ethical considerations of different reproductive genetic technologies through small group discussions of case studies. We started by introducing commonly used technologies such as carrier screening and prenatal or pre-implantation genetic testing for aneuploidies and Mendelian diseases. We then progressed to address emerging technologies such as pre-implantation genetic testing for complex traits via polygenic scores, as well as germline genome editing. This allowed students to begin extrapolating future implications of genetics research in both clinical settings and society more broadly.
The following session pivoted to current and future ethical concerns that relate to privacy in genetic databases and the identification of individuals with genetic material. We first described the use of forensic genetics in the criminal justice system and its intersection with race. Students then read different case studies of forensic genetics and discussed the harms and benefits associated with the use of genetics. To ensure students gained a variety of perspectives on forensic genetics, the case studies covered the use of genetic material for conviction of a crime; exoneration of wrongly convicted individuals; and reunification of children with families. We additionally evaluated the different privacy and (re)identification concerns posed by participation in research and direct-to-consumer genetic databases, especially in light of the role played by a personal genomics database in identifying and convicting the Golden State Killer. Given that we were nearing the end of the course, we wanted to prompt more self-reflection among students. We therefore ended this class by brainstorming different social harms that arise from genetics research, and the different protections or harm mitigation strategies that scientists could adopt in response.
For the penultimate class, we brought students to the Stanford library to directly engage with historical documents. To choose the documents, we (R.A.P. and R.A.U.) initially surveyed hundreds of materials in the Stanford University Archives that pertained to genetics, ethics, and society. We ultimately curated a selection of documents relating to five topics: historical perspectives on eugenics; historical perspectives on race, genetics, and IQ; sociobiology and scientific activism; community activism against the study of biological causes of violence; and community activism against forced sterilization. For each topic, students spent some time looking through the documents before we facilitated small group discussions about their content. We concluded the class with a large-group discussion to help students process the difficult material and connect it back to modern day genetics research and society.
We purposefully situated this activity towards the end of the course in order to bookend our course with discussions about the history of genetics. Moreover, given that the selected documents encompassed multiple themes from the course (including genetic determinism and racial essentialism, sex and gender, race and genetics, community engagement, forced sterilization and eugenics, and scientific activism), we believed that students would be better prepared to engage with the documents after having the opportunity to integrate knowledge from the relevant classes.
After spotlighting these historical examples of scientific and community-led activism, we dedicated the last class to self-reflection. Throughout the class, we intentionally emphasized that students were active participants in the scientific structure. However, we saved the most pointed self-reflection for the end given the amount of knowledge, humility, and unlearning necessary to interrogate one’s own role and responsibility as a scientist. We asked students to (1) consider their positionality and reflexivity in relation to their work as researchers, and (2) imagine what actions they could take across different personal and professional spheres and different timescales to achieve their vision of a more equitable and just scientific enterprise.