ELSIcon2022 Networking Session: Ethical Aspects of Reproductive Genetic Carrier Screening: Sharing Insights

ELSIcon2022 • Networking Session • May 31, 2022

Lisa Dive, Ainsley Newson

We invite congress attendees with interests in reproductive genetic carrier screening (RGCS) to join us for a discussion on the ethical, legal and social aspects of this intervention. For example, issues arising from RGCS include how its goals and outcomes should be defined, whether it is appropriate to recommend RGCS, and what kinds of conditions should be screened for. We are keen to facilitate networking between people with experience or insights about offering RGCS in a variety of forms – whether community-based programs, private providers, government funded programs, pilots of various types. Your work can be theoretical, empirical or literature based. We can in turn share highlights from the ethics program of research within Mackenzie’s Mission, the Australian Reproductive Genetic Carrier Screening Program, a three-year pilot project which is screening around 8,500 couples in Australia.

Also relevant to this topic is the recent ACMG Practice Guideline for carrier screening (Gregg et al) published in Genetics in Medicine in July 2021. We invite attendees with various perspectives on this practice guideline to share their views about both the theoretical approach taken therein , and practical aspects of its implementation.