Executive Director's Note, June 2020

Dear CHRI members and friends,

anderson-berry-photo-2.jpgI write to you this month in a profound period of unrest, social uprising and increasing momentum for societal change. The movement Black Lives Matter must be more than a slogan or a hashtag, but a reality in 2020. We have seen the negative differential impact of multiple aspects of our society on Black and brown lives. Our policing, justice, educational and health care systems have all been highlighted as suspect in the systematic maltreatment and failure to support our Black and brown patients, colleagues, friends and neighbors.

Where can we be confident that every life is treated and recognized as equal? Well, many of you reading this letter might turn to science. Science is evidence-based, blinded, designed to be without bias, adjusted for confounders and, therefore, above all scrutiny in a time when we must be introspective about every aspect of our lives. Perhaps, in a perfect world, this would hold up as an examined and proven truth; however, we live in an all-too-human world. Remembering the racist and uninformed history of our lofty profession and the significant and troubled history that some of our most profound achievements are built upon is necessary if we are to make amends for a racist past and avoid the perils of these mistakes in the future.

As many of you are aware, science and medical science have subjugated Black and brown people, ignored their basic human dignity and profited from their misfortune. Some of the profound examples are documented in the book The Immortal Life of Henrietta Lacks by Rebecca Skloot. Scientists today still benefit from the cell line developed from her tumor tissue sample, taken without her permission at one of the most prestigious medical centers in the country. As recently as 2005, members of the Native American Havasupai Tribe had tissue samples donated for diabetes research diverted without their permission for the study of inbreeding and schizophrenia. Nothing we study from our human subjects should be performed without their express consent after full explanations are made and assured to be understood.

Another dark part of our medical scientific past is the 40-year Tuskegee study of untreated syphilis in Black males that continued for years after penicillin, an effective treatment, was found. This horrific study led to the 1979 Belmont Report, the establishment of the Office for Human Research Protections, and the development of institutional review boards. We must continue to learn from our past and our mistakes so that we don’t repeat them.

Science is often twisted and manipulated, then used as a foundation for race superiority. In the book Superior, Angela Sanini documents the history of the twisting of ideas and results leading to turn of the century human zoos, where people from across the world were kept in public cages in Paris, to the current attempts to reinvigorate race science using genetics to support eugenics theories. Many universities and prestigious academic centers have unknowingly been the center of organized groups of academics supporting these ideas. We must invest the time and effort to see through these pseudo-scientific groups, meetings and publications if we are to meet our mission to Improve the health of children through innovative research, collaborative discovery, community engagement and advocacy.  

I challenge all of us to learn and acknowledge this history of science to help us to avoid repeating these events or the echoes of these themes disguised as a new study or innovation.

In addition, we must be inclusive in our advancement of Black and brown scientists’ discoveries and academic work.

As Sandra Boitumelo Phoma stated on STEM Twitter, “Cite Black scientists. Invite us to talk about our science. Don’t make us the face of your inclusion and diversity committees. Don’t ask us to build solutions. Learn to say our names correctly. Give us credit. Support our mental health.”

When you are planning conferences or inviting CHRI or Grand Rounds speakers, think about the Black, brown and female voices we haven’t heard who are doing profound work without a national platform. Invite them into our institutions with excitement and set our stage to help everyone succeed because of their knowledge and talents. With any luck, they will see our culture and our strategy and our growth potential, and we can entice them to join us on the great journey we are taking together to improve child health through exceptional research.

In summary, I quickly acknowledge that I am not an expert in this area, but I know I can use the CHRI platform I have been granted to help drive forward a critical conversation. Thank you for reading these thoughts, thank you for thinking about these issues as they relate to your science and your ability to promote others, thank you for speaking out, and thank you for acting in a way that will take us all further together.

Because Black Lives Matter, but even more than that, Black lives, experiences, thoughts and expertise are ESSENTIAL to do better for the populations that we serve.

Today’s children can’t wait for tomorrow’s innovations. We need to work together now!

Thank you for all you do,

Ann