Family Engagement, Diversity, Equity, and Inclusion (DEI) Access in Newborn Screening Research

Family engagement and rare disease advocacy drive the innovations and accelerate the discoveries that advance newborn screening research. Today, we are excited to have Natasha Bonhomme, a health communications strategy and family engagement expert who has led ground-breaking initiatives to empower individuals, families, and their communities to transform health care.  Natasha is currently the Chief Strategy Officer for Genetic Alliance and the founder of Expecting Health, a national effort to create outreach strategies and deliver educational programming to diverse communities, with a special emphasis on maternal and child health issues.  A decade ago, Natasha and her team launched Baby’s First Test as the first National Newborn Screening Resource Center to provide education, family support and services information, and resources about newborn screening at the local, state, and national levels.  Natasha received her BA in Psychology from Boston College and began her career as a summer intern at NIH. This year, 2022, her journey from intern to national expert was recognized as Natasha and received the Judi Tuerck Newborn Screening Follow-up and Education Award for her significant contributions.  Listen along with us as she shares advice on engaging families and educating the next generation of advocates to help speed research to develop new technologies to screen, diagnose, treat, and manage the disease. Newborn screening saves lives, and leaders like Natasha help make it possible!

Interview Questions: 

1. Congratulations on receiving the Judi Tuerck Newborn Screening Follow-up and Education Award at the APHL NBS Symposium. This award honors someone who has made significant and outstanding contributions in providing innovative newborn screening follow-up training/education for best practices.  This year recipient is you, Natasha. You are the founder of Expecting Health and chief strategy officer, Genetic Alliance.  Baby first test is a part of the Expecting Health, and it has been 10 years. For our audience, could you share the mission of Expecting Health and how they can learn more? 

2. You have a new program called Parent Navigators. Can you tell us about this program and why it is important?

3. You are also the Chief Strategy Office of Genetic Alliance. Can you share with our audience your role and the mission of Genetic Alliance? How did you get involved with newborn screening research? 

4. Your work involved engaging and empowering families in the decision-making process on maternal and child health issues.  In the era of expanding newborn screening with additional conditions on the RUSP and the potential of using genomic sequencing, what are family perspectives towards genetics, and what are the challenges that researchers need to reconsider in conducting public health genetics and genomic research?  

5. What advice do you have for researchers to engage families and advocacy organizations to amplify their voices and concerns in the design of their research study? 

6. Newborn screening tests are conducted by the State Newborn Screening Program. Can you describe an example of large-scale education for newborn screening? Do you have tips on partnering with the state program?

7. UCSF recently published an article titled “Non-White Newborns With Cystic Fibrosis More Likely To Be Missed in Screening.” Your work has intersected the area of diversity, equity, and inclusion.  What do you think we as an NBS Research Community need to do?

8. Are you involved in training the next generation of advocates, and what do you tell them about newborn screening research?

9. What does NBS research mean to you?