• 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]

“Informed consent” has long been held up as the gold standard of patient care in Western medicine. In this episode of Genetic Frontiers, Blair Stevens, MS, CGC, Director of Prenatal Genetic Counseling Services at McGovern Medical School at UTHealth Houston talks about what informed consent means when it comes to making hundreds of choices about genetic testing around pregnancy. She also discusses the computer module a team at UTHealth Houston created to support prenatal genetic decision-making and the genetic counseling process.

KEY TOPICS

• Introduction to the history of informed consent [0:00-3:03]

• Background on prenatal genetic testing [3:03-5:45]

• Introduction to Blair Stevens, CGC and her work at UTHealth Houston [5:45-6:59]

• Why did the UTHealth Houston team build a computer module to support genetic counseling? And how does it work? [07:00 - 9:18]

• What percentage of patients are using the computer module? And which ones? [9:18- 10:51]

• What does meaningful, informed consent really means in the setting of prenatal genetic counseling? [10:52 - 13:07]

• With the menu of prenatal genetic testing options ever expanding, how does that change decision making? [13:08-15:57]

• How has offering patients a menu of options in prenatal genetic testing affected the experience? [15:57 - 18:08 ]

• What are some of the different ways people deal with genetic information when they're trying to expand their families? [18:09 - 19:55]

• Do we need to make a larger cultural shift around ideas of genetic difference and disability? [19:55 - 22:23]

• Discussion of genetic underpinnings of many common or chronic illness and what those mean for prenatal care [22:24 -:24:12]

• What do you see as the future in terms of full genome sequencing and prenatal genetic decision-making? [24:12 - 26:24]

• What would it mean for their lives going forward if we start sequencing all people or many people when they are newborns? [26:24 - 30:44]

• Discussion of how knowing your genetic health risks could affect your insurability & wrap-up. [30:44 - 33:08]