A conversation with an award-winning science journalist and author, Angela Saini, about the alluring but dangerous pursuit of “improving” the human species through genetics and how it's driving American politics and policy today.

TOPICS

• The ideology of eugenics is fundamentally driven by a pursuit that can seem deceptively desirable: the “improvement of the human species.” What does it really mean to “improve” people?

• How does the pursuit of perfection drive eugenic thinking?

• How are you thinking about efforts today to scrub scientific research of engagement with gender and race?

• Across human history how have people thought about biological sex gender and social roles?

• What did DNA testing bring to the conversation about how patriarchy spread?

• What do you think medical and genetics professionals should really be paying attention to in terms of how science, in particular genetics, is being discussed today culturally and politically?

• How does taking a long view of human history inform how you're thinking about the political moment we're living through right now?

• Do you think the left / progressives have a cohesive story that people want to hear?

For episode show notes and resources go to: https://www.geneticfrontiers.org/episode9-angela-saini

In this episode, Chelsey Carter, PhD, and Brett Maricque, PhD, founders of the Black Genome Project (https://www.blackgenomeproject.org/) talk about their work to understand how Black communities value their genomes and genetic data, how genetic research is impacting Black communities in St. Louis, and whether genomic sequencing is valuable for everyone.

TOPICS

• Introduction to the Chelsey Carter, PhD; Brett Marique, PhD, and the Black Genome Project

• Discussion of how the Black Genome Project is collaborating with the Black community in St. Louis, its local nature, and how the team is collecting data

• Discussion of how the Black Genome Project is using storytelling, focus groups, structured surveys and why they chose this approach

• What has been the most powerful part of what have you heard from the Black community in St. Louis?

• How do you approach people as an expert in their own lived experience within healthcare and genetics?

• How can the Black community exercise agency over their genetic information?

• Discussion about understandings about nature v. nature and genetic literacy

• How do you talk about ideas like rejecting race as biology, race as a social construct, racism underlying health disparities and the need to diversify genomic data sets?

• Where the Black Genome Project is headed in the future

• Introduction to genetic difference & disability, Dr. Arielle Silverman, Director of Research for the American Foundation for the Blind [00:00 - 4:15]

• Excerpt from Arielle Silverman’s book, Just Human: The Quest for Disability Wisdom, Respect, and Inclusion [4:15 - 8:33]

• Can you talk about your research on disability simulation exercises and emotional perspective taking? [8:34 - 13:30]

• Do you think true empathy building exercises are even possible for better understanding the experiences of people living with disability and difference? [13:30 - 15:07]

• What are the five stages of inclusion related to people with disabilities or difference that you write about in your book? [15:07 - 20:24]

• How do you think we can shift people's mindset around inclusion? [20:24 - 22:24]

• What do you wish people and clinicians understood better about your lived experience as a blind woman, advocate, and researcher? [22:24 - 25:14]

• Given that genetic screening and testing has become a standard of care in prenatal medicine, how do you think genetic counselors should approach prospective parents when talking about the wide variety of genetic differences and disabilities? [25:15 - 29:55]

• Could you describe the differences between how a blind person and a sighted person does complex math? [29:56 - 35:15]

• Do you consider being blind a form of neurodivergence since your brain is doing the same things, but just going about it differently? [35:16 - 36:43]

• Can you talk a little bit about that work and your views about how we can better support kids with disabilities? [36:44 - 39:37]

• Wrap up [39:37- 41:08]