Dismantling the Fear
It’s hard to believe it’s been almost a month since I attended the 2024 National HBCU Week Conference in Philadelphia, hosted by the White House Initiative on Historically Black Colleges and Universities. I had the amazing opportunity to connect with organizations, federal agencies, and businesses, and engage with students, alumni, educators, and leaders from all over the country—I even saw President Biden, who highlighted his administration’s efforts to support HBCUs! It was great meeting so many people, all while raising awareness about the need for diversity in the bone marrow donor registry.
Many attendees were unaware that the bone marrow donor registry even existed, while others shared stories of loved ones who had to search through the registry for a match. One attendee recounted how a friend with blood cancer was receiving a bone marrow transplant that very day, inspiring them to join the registry right then and there. Moments like that encouraged several others to register, and even motivated students and faculty to host drives on their campuses, particularly when they learned that people of color have a harder time finding matching donors compared to white individuals.
But not everyone was ready to sign up. Many expressed concerns about the privacy of their genetic and personal information. And it’s understandable—especially among Black and African Americans, who historically have been served poorly by the health care system. The horrors of the Tuskegee experiments and the unauthorized use of Henrietta Lacks’ cells has led to significant mistrust in the medical community.
To address these concerns, the National Marrow Donor Program (NMDP) emphasizes its commitment to privacy. They state,
“We do not sell, rent or lease member information to third parties. NMDP and its network centers follow strict rules designed to prevent unauthorized sharing of personal information. Absent a valid court order from law enforcement, your information will not be shared with law enforcement agencies.”
They also highlight their dedication to security:
“The NMDP is committed to ensuring the security of your information. To prevent unauthorized access, maintain data accuracy, and ensure the appropriate use of information, we have put in place reasonable physical, electronic, and managerial procedures to safeguard and secure the information we collect online.”
This includes modern encryption software to keep your data secure during transmission, as well as compliance with applicable laws to protect your personal information.
But even with these measures in place, building trust won’t be easy, and it won’t happen suddenly. We need to address the historical injustices and create spaces for open dialogue about concerns so that the Black community and other communities of color can feel at ease with the advancements being made in medicine and recognize the power they have to save a life.
For many blood cancer patients, finding a matching bone marrow donor is their only hope for survival. That’s why There Goes My Hero is committed to dismantling the fear surrounding the bone marrow donor registry. Addressing privacy concerns is just the first step and we hope that by doing so, more people will feel motivated to take action and be a hero.
If you have any questions or concerns about the bone marrow donor registry, please feel free to reach out to us at andrea@theregoesmyhero.org.