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]

“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]

In this episode, Lisa Schlager, the Vice President of Public Policy at FORCE, a national advocacy organization, discusses genetic testing, prevention, treatment, and legal protections for people at risk for hereditary cancer.

• Introduction: concerns of people at risk of hereditary cancer; FORCE, a national advocacy organization; and Lisa Schlager, VP of Public Policy at FORCE [00:00 - 3:15]

• Tell us about your personal journey with hereditary cancer, and how you got involved in advocacy work? [3:15 - 11:23]

• What is GINA, the Federal Genetic Information Nondiscrimination Act, and what protections does it offer–and fail to offer—for people living at risk of genetic disease? [11:23-14:01]

• How FORCE is advocating with state legislatures to expand anti-discrimination protections beyond those offered by federal law? [14:01 - 16:50]

• What are some specific examples of issues you're working on at FORCE to help make sure that people living at risk of hereditary cancer get the healthcare they need? [16:50 - 20:01]

• What does Medicare cover when it comes to genetic testing for hereditary cancer? [20:02 - 22:06]

• Why is it so important for healthcare providers and people to understand if they have a risk of developing hereditary cancer? [22:07 - 24:50]

• What are some resources for people who are concerned that cancer in their family could be hereditary? [24:50 - 26:33]

• What can healthcare providers do to help people understand and respond to the potential inherited risks of cancer? [26:34 - 30:53]

• Wrap-up [30:54 - 32:18]

In this episode, Kendra Schaa, ScM, LGC, a prenatal genetic counselor at a major medical center talks about the importance of the therapeutic model in meeting patients where they are. She also discusses how prenatal genetic counseling is influenced by the profession’s roots in biology over psychology, the skyrocketing number of genetic tests, and the overturning of Roe v. Wade.

Full episode & transcript at:
https://www.geneticfrontiers.org/episode3-kendra-schaa

• Introduction to personal story of prenatal genetic counseling and history of genetic counseling profession

• How does genetic counseling’s roots in the field of biology more than psychology or therapeutic counseling influence the profession today?

• How does the genetic counseling interaction need to change?

• With so many genetic tests out there, how do you think genetic counselors can best support patients to decide what tests are right for them?

• What tools do you think genetic counselors need?

• Can you talk a little bit about Allay Life and your focus on providing therapeutic support to people during their reproductive journey?

• As a genetic counselor, what do restrictions on women's rights to choose when to terminate a pregnancy mean for how you counsel them?

• How do you think genetic counselors can be champions of the future of genetics in medicine?

• Monthly Peer Supervision Groups hosted by Allay Life.

• Allay Life: Light in the Unexpected Pregnancy Journey.

• Allay Life. Finding Your Way After Unexpected News in Pregnancy Workbook.

• Schaa KL, Biesecker BB. Where is the "counseling" in prenatal genetic counseling? Patient Educ Couns. 2024 Jul;124:108278. doi: 10.1016/j.pec.2024.108278. Epub 2024 Mar 29.

• Masha Gessen. Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene. 2008.

• Seymour Kessler. Genetic Counseling, Psychological Dimensions. 1979.

In this episode of Genetic Frontiers, Katie Lee Hornberger, a certified genetic counselor with the Seattle Sperm Bank talks about how genetic testing has shaken up the sperm banking industry. DNA testing has changed everything, forcing the industry to move from a paradigm that prized anonymity towards one of greater transparency about biological relationships, genetic risks, and family medical history.

Go to episode details on Genetic Frontiers at:
https://www.geneticfrontiers.org/episode2-katie-lee-hornberger

• Introduction to the sperm banking industry

• Introduction to Katie Lee Hornberger, CGC

• How has genetic testing changed the sperm banking industry?

• What types of genetic or health conditions rule out a person's ability to be a donor?

• Do you test donors for CADASIL, for example? If you don’t, how do you explain to potential recipients that donors may have unknown genetic risks?

• How would you describe the culture of risk within the gamete donor community?

• Not allowing some groups of men to donate sperm could be viewed as discriminatory or eugenic, so why do sperm banks have these limitations in place and what they mean for families who are using sperm to form their families?

• Given our ever-changing understanding of people’s genetic risks, what do you see as the future of spermaking and sperm donation?

• Following the legal trend towards greater openness and transparency in sharing genetic and medical information with donor-conceived people, what does this mean practically for places like the Seattle Sperm Bank?

• What, if any, relationship do sperm bank recipients continue to have with the sperm bank after donation?

• Do sperm banks conduct a genetic screening on sperm bank recipients, ie, the women who use sperm donations to try to conceive?

• How does the sperm bank handle the situation when a donor-conceived child is later found to have a genetic condition?

• How are sibling limitations supposed to work?

• Wrap-up

• Genetic Counseling, Fertility, & Miscarriage Awareness | Katie Lee CGC

• Katie Lee, CGC Talks Miscarriage and Fertility - YouTube

• Peter Boni. Uprooted: Family Trauma, Unknown Origins, and the Secretive History of Artificial Insemination. Green Leaf Book Press, 2022.

• Homepage - We Are Donor Conceived

• American Society of Reproductive Medicine. Guidance regarding gamete and embryo donation. 2021.

In this episode, Nerine Gregersen, MD, a former pediatrician, clinical geneticist, and logotherapist, discusses how learning genetic information about oneself can have profound emotional and existential impacts.

She talks about how logotherapy, a form of psychotherapy that emphasizes finding meaning as people’s primary motivation, can help support people navigating difficult diagnoses or profound life shifts triggered by genetic discoveries.

Go to episode details on Genetic Frontiers.