HONORING THE LEGACY OF HENRIETTA LACKS THROUGH LEGISLATIVE ACTION

BY JANICE M. PHILLIPS, PHD, RN, CENP, FAAN

In The Immortal Life of Henrietta Lacks, author Rebecca Skloot provided a very detailed discussion of the life and times of Mrs. Henrietta Lacks. In 1951, Mrs. Lacks, an African American woman, died from cervical cancer. Unbeknownst to Henrietta or her family, medical personnel acquired samples of her cervical cancer tumor and proceeded to conduct hundreds of scientific studies. These studies culminated in hundreds of innovative breakthroughs in science and health care and even several Nobel prizes.

Referred to as the HeLa cell line, Mrs. Lack’s cervical cells provided the rich foundation for finding treatment solutions for numerous conditions worldwide. The use of these cells, cloned in culture, resulted in unprecedented breakthroughs in molecular biology, genetics, and cancer research methods. Studies using the HeLa cell line also led to effective treatments for conditions such as sickle cell anemia, polio, Parkinson’s disease, leukemia, cervical cancer, and many other conditions.

Decades later, individuals and communities continue to highlight the atrocities of conducting research with the HeLa cells without informed consent both here and abroad. Since the 1950s we have stronger precautions to protect human subjects through a stringent informed consent process. Thankfully, we have detailed guidelines along with checks and balances to help protect human subjects and human tissue specimens in biomedical research. Still, many members within communities of color remain skeptical regarding participation in biomedical research.

Despite improvements in the protection of human subjects, many underrepresented minority populations are reluctant to participate in biomedical research or clinical trials and often cite the Tuskegee Syphilis study or the Henrietta Lacks story as a factor for not participating into such studies.

Given the importance of medical research, all populations regardless of background or geographic location are critical to advancing science and medical care. This is especially true for communities of color who remain underrepresented in research studies.

In recognition of the continuing need to increase minority representation in biomedical research and to the honor the life and legacy of Henrietta Lacks, the 116th Congress passed the Henrietta Lacks Enhancing Cancer Research Act of 2019. Introduced by the late Representative Elijah Cummings (D-MD) and Senator Chris Van Hollen (D-MD), this legislation aims to ensure equitable access to clinical trials in order to advance cancer research. This Act requires the Government Accountability Office (GAO) to conduct and publish a study that outlines how federal agencies are addressing barriers to clinical trial participation in federally funded research. There is a specific focus on underrepresented populations who suffer disproportionately from cancer and lack adequate representation in cancer clinical trials. President Trump signed this Act into legislation on January 5, 2021.

Janice M. Phillips, PhD, RN, CENP, FAAN, is an associate professor at Rush University College of Nursing and the director of nursing research and health equity at Rush University Medical Center.

For a detail description of this legislation, please visit the following sites:

• The Henrietta Lacks Enhancing Cancer Research Act of 2019 https://www.congress. gov/bill/116th-congress/ house-bill/1966/text? format=txt

• Office for Human Research Protections https://www.hhs.gov/ohrp/ • A Resource of the Lasting Legacy of Henrietta Lacks https://osp.od.nih.gov/ 2019/06/13/new-nih-resource-lasting-legacy-henrietta-lacks