Introduction
Diverse Research Now(DRN) recognizes cultural sensitivity's pivotal role in engaging with historically marginalized communities in clinical trials. The American Psychological Association defines culture sensitivity as awareness and appreciation of the values, norms, and beliefs characteristic of a cultural, ethnic, racial, or other group that is not one’s own, accompanied by a willingness to adapt one’s behavior accordingly.
We aim to shed light on effective strategies for engaging with historically marginalized communities also known as racially and ethnically diverse populations (REPs). This is inspired by the invaluable insights of Dr. Ronald Pattillo, particularly his guidance to Rebecca Skloot, the author of the non-fiction book “ Immortal Life of Henrietta Lacks”. Dr. Pattillo gave Mrs. Skloot a detailed list of how to approach Mrs. Henrietta Lacks' family. He wanted Mrs. Skloot to be careful not to upset or cause additional harm to the family considering the injustices they had experienced. Dr. Ronald Pattillo became the Lacks family advocate after being a part of the team of doctors who treated their mother Mrs. Henrietta Lacks in 1951.
We will explore the profound relevance of Dr. Pattillo's principles in contemporary clinical trial engagement. Though Dr. Pattillo’s guidance was given on behalf of a black southern family, his advice could be applied to all racial and ethnic diverse populations. Dr. Pattillo was the Lacks family advocate similarly DRN is working to be an advocate for REPs, ensuring these communities' inclusion in medical science discoveries and advancements.
Background
Mrs. Henrietta Lacks' story illustrates the historical injustices common in biomedical research. This is particularly concerning the exploitation of disadvantaged communities. As the family gatekeeper, Dr. Pattillo gave Rebecca Skloot a vital road map on how to speak to Mrs. Henrietta Lacks oldest living daughter, Deborah Lacks.
The Mother of Biomedical Science
Because of Henrietta Lacks unknown donation in 1951 of her rapidly reproducing “immortal” cells also known as HeLa cells, biomedical research was changed forever.
HeLa cells have been used in more than 74,000 studies and have led to breakthroughs in biomedical research around the world, including the development of the polio vaccine by Jonas Salk in 1954—and more recently the HPV vaccines; treatments for diseases such as diabetes and AIDS; and other lifesaving research, including the effects of radiation and toxic substances.
This road map for interacting with Ms. Deborah Lacks and her family included suggestive do's and don'ts that represent essential principles of honesty, compassion, patience, and respect. They proved instrumental in fostering trust and collaboration.
Strategies
Disparities in clinical trial participation still exist despite recent efforts from the FDA, Big Pharma, biotechs, and sponsors. The underrepresentation of REPs makes it difficult for research findings to be applied broadly and fairly. Historical injustices, such as the exploitation of Mrs. Lacks, continue to engender mistrust and reluctance among diverse communities. Therefore, we urge Big Pharmas, biotechs, sponsors, and sites to consider following Dr. Pattillo's guidance to effectively engage with these communities.
Dr. Pattillo's principles suggest strategies for engaging with diverse communities in clinical trial participation.
Conclusion
Dr. Ronald Pattillo's advice on working with Mrs. Henrietta Lacks' family highlights the significance of cultural sensitivity in clinical research. To enhance diversity in clinical trials, Big Pharma, biotechs, sponsors, and sites should prioritize trust-building and inclusivity, embracing honesty, compassion, patience, and respect. Diverse Research Now advocates for the integration of these principles into research practices. All stakeholders are invited to join us in cultivating a more equitable and inclusive research landscape.
For further insights and resources on cultural sensitivity in clinical trial engagement, visit Diverse Research Now's dedicated space on our website honoring Mrs. Henrietta Lacks and her enduring legacy in biomedical research.