3:30 Racism in; racism out: research reveals that because of data inequities, genetic testing is often less accurate for individuals not of Northern European descent. And AA points out they still pay the same amount for the test.
8:30 Are some tests better than others? Yes, says CH. Being aware in our practice can make a difference. And, AA notes, expanded carrier screening has been around for 10 years. There’s no need to practice race-based medicine.
10:00 Race is a bad proxy for genes. In a study of 93,000 people, genetic ancestry and self-reported ancestry were discordant 10% of the time.
12:15 How do we do better? AA suggests that for carrier screening, it might start with updated guidelines. Neither NSGC nor ACMG have guidelines that discuss expanded carrier screening. Offering screening only on request is “more common than folks would like to admit…”
22:25 Will diversity in the GC profession improve the situation? AA gives us a report on the work of the NSGC Diversity and Inclusion task force (of which she was co-chair). Hiring a professional DEI group to evaluate all aspects of NSGC practice is necessary because “underrepresented minorities should not have the onus of figuring out what all the problems are and proposing solutions.”
30:30 What began as a twitter conversation about best practices got emotional. What did we learn? We need to have “the uncomfortable conversations.”
Aishwarya Arjunan of Myriad’s Women’s Health and Carrie Haverty of the biotech start-up Miroculus join Laura to discuss dialogues that have cropped up recently on Twitter and in other places against the backdrop of a moment of national reckoning on how racism past and present shapes our society.
Our own accounting includes a look at how exclusion and mistrust have made genetic medicine less effective for some populations than others, how practice can mitigate or perpetuate those inequities, and how to make our field more diverse and welcoming for under-represented groups.