Driving Miss Berncenia

It’s 1999. Tim Kaine is Mayor and Calvin Jamison is City Manager. I’m a medical geneticist at VCU and committed to improving the health of families in Richmond. At the downtown Marriott LMR introductory meeting, Tina Egge introduces me to Berncenia Faggins, 75 year-old community volunteer in Oregon Hill. Berncenia doesn’t drive and needs a ride to the Windmill Point orientation. We are both short enthusiastic talkers with different skin pigments. The learning between friends begins. Of all the contrasts we discussed, one stands out – Berncenia didn’t go to high school because teens in Henrico County needed to be able to afford transportation into Richmond. Her family didn’t have the money then. Later, she recognized suboptimal healthcare when she was pregnant. She was life-smart. Racism and circumstances limited the equivalency of our opportunities.

Down the road our clinical genetics group asked the LMR Class of 2004 Power Rangers Project Team to consider how to bring broader awareness and genetic literacy to the Richmond community. Family health history – talk it up, write it down, pass it on – was still a taboo topic for many. While the Human Genome Project was about at its halfway point, historic experiences with discrimination, the whiteness of most genetic providers, and other factors were barriers to health equity.  This meant potential improvements in health associated with making choices about how to use genetic information wisely were not accessed equally across all the resource and educational separations we saw in Richmond. Our project team was well-intended and majority white. I had not included Berncenia and all that she had taught me. The project did not have much impact.

It’s 2019.  Elijah Cummings of Baltimore has just died.  I’m a medical geneticist at Johns Hopkins and committed to improving the health of families in Baltimore. By now, I’ve learned to take the implicit assumption test every 6 months, host a family history table at the NE Market in Baltimore twice a month with Hopkins students, and get funding for a project -G3BICL, Genetics for the Greater Good, Baltimore Intergenerational Community Listening and Learning.  I am nearly the age Berncenia was when I first met her and now work to move at the speed of trust and to start with community conversations and participation.  My not so good outcomes, outright mistakes from blinders and not having everyone at the table have taught me more about making a difference than any awards.  Berncenia sits next to me, thanks to the LMR connection 20 years ago. She died in 2004 and remains my teacher about aging, family, and what matters.

Joann Bodurtha
Pediatric Geneticist & Visitng Professor
Johns Hopkins McKusick-Nathans Institute of Genetic Medicine
LMR Class of 2000