“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.