Chapters:
02:03 Ellen’s stance against gene patenting is common wisdom now, but 12 or 13 years ago, it was “very unpopular.” She explains why she ended up the lead plaintiff in ACLU v Myriad.
06:00 What turned Ellen into an entrepreneur? It started with Angelina Jolie…
10:13 Ellen explains what My Gene Counsel offers to a typical customer, who has done DTC or clinical testing for cancer susceptibility.
20:30 My Gene Counsel part two: cardiogenetic information.
23:25 You never want to be the “interesting” patient: Ellen explains how she decided on the price point for My Gene Counsel, which is designed to be accessible to everyone, including those who bought DTC tests just for fun and got “interesting” results…
28:40 Ellen shares her personal story of a DTC genetic testing shock.
38:35 On understanding where your mind goes. “I was picturing my nine-year-old daughter not having a mother…”
46:21 On breaking down barriers: “I originally asked my attorney to introduce me to some women who’ve done this and he wasn’t able to, not in my area.”
Ellen Matloff has one of the most unique stories in genetic counseling today. She worked at Yale to found the cancer counseling program in the early days of that discipline and was an early and highly visible voice in the battle against gene patenting. Eventually, her experience with the expanding presence of cancer susceptibility testing led her to found a business that attempts to provide a low-cost, scalable option to fill in the informational gaps for individuals who’ve had genetic testing.
