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]

Eugenics is at the core of the emergence of the genetic counseling profession. In this episode, Alexandra Minna Stern, PhD, the Humanities Dean at UCLA, a historian, and researcher, discusses how this entanglement casts a long shadow over the profession and offers important historical context for some of the present day challenges facing the fields of genetics and genomics.

KEY TOPICS

• Introduction to the Professor Alexandra Minna Stern and background on the genetic counseling profession and the eugenics movement [0:00 - 04:05]

• Reading of excerpt from Telling Genes the Story of Genetic Counseling in America [04:05-11:01]

• Why did you choose to tell this history of genetic counseling? And how did you reconstruct it? [11:02-12:55]

• Can you describe what you call the eugenesis of the genetic counseling profession, and how you think it influences the practice of medicine and genetics today? [13:56 - 19:50]

• How prevalent were eugenics views among the genetics profession as a whole? How did eugenics affect research priorities or funding? [19:51 - 25.03]

• How would you describe overall the relationship of the genetic counseling profession to race historically and in current day practice, given that the genetic counseling profession today is overwhelmingly white? [25:03- 29:39]

• Can you talk a little bit about the work you do in the lab around forced sterilizations? And also your research into this topic? [29:39- 35:21]

• What types of people were targeted with forced sterilization? Where were they performed? [35:22 - 43:08]

• Historically, how have you seen genetic counselors or geneticists contribute to this reductionist thinking about people living with genetic difference? And on the flip side, how have some medical professionals worked to expand the profession's approach to genetic difference in disability? [43:08-54:12]

• Wrap up [54:15-56:40]