Episode 5: Informed Consent & Prenatal Genetic Testing

“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]