Lessons From Henrietta Lacks’ Story: Improving Research Collaboration With Patients, Communities

Stunned, surprised and moved — These are just some of the reactions people shared in a discussion on ethics, race and medicine after viewing the movie, The Immortal Life of Henrietta Lacks, at the Science at the Cinema event in Rochester, Minnesota, held in August. The film tells the compelling story of Henrietta Lacks, whose cells were removed during cervical cancer treatment in 1951 without her knowledge or permission. Those cells were then used to make pioneering discoveries for many medical treatments still used today.

Many attending the Science at the Cinema event were shocked by the unethical treatment of Lacks and her family back in 1951, and some expressed reservations about participating in research. However, others felt that the scientific community has taken steps to more appropriately address ethical issues today.

What’s changed to prevent it from happening again?

A lot has changed in the 66 years since Henrietta Lacks’ cells were used without her knowledge or permission. Today, investigators must obtain informed consent from participants before initiating a research study. In addition, participants’ privacy rights are now protected.

According to LaPrincess Brewer, M.D., a cardiologist and clinical investigator within the Mayo Clinic Department of Cardiovascular Medicine, it is also critical for investigators to earn the trust of participants before initiating any research efforts. As she explains, the benefits can be far reaching.

“I trained at Johns Hopkins University where Henrietta Lacks was treated, and I also cared for patients from the same neighborhood where she resided. When working to enroll patients in research studies, I constantly addressed questions about why participation in research was important and how it would benefit them and their families. Through education and persistence, I gained their trust. This is critical because these participants are from minority populations that are traditionally underrepresented in medical research. Through their participation, we ensure that we have rich research data from all populations to help identify key genetic, biological or lifestyle differences that may help us individualize and improve care,” says Dr. Brewer.

Mayo researcher Nasra Giama echoed Dr. Brewer’s comments on the benefits of educating potential research participants.

“As a researcher, I have seen how education can help enhance research participation. By translating research information for the local Somali community, we were able to inform participants about all aspects of the research process. They became more than just participants, they became partners in our efforts,” says Giama.

Mayo Clinic researchers are continually working to address ethical issues in medical research, seeking community input when developing new research initiatives. For example, Community Advisory Boards are in place to review policies that safeguard the privacy of those who donate blood and tissue samples for research to the Mayo Clinic Biobank.

According to Richard Sharp, Ph.D., director, Mayo Clinic Center for Individualized Medicine Bioethics Program, Lacks’ story showcases why investigators need to understand that behind every research participant is a person and a community with a story.

“When designing a research project, investigators must consider how a study will affect those volunteering to participate. That’s where community input is so important. Our Community Advisory Board members help Mayo Clinic address issues such as how to return research results to participants and the best way to explain future projects. These perspectives have been invaluable in developing research that engages and ultimately will benefit the community,” says Dr. Sharp.

Mary Gorfine, community representative and chair, Mayo Clinic Community Engaged Research Advisory Board, also emphasized the importance of community involvement in research.

“I was very touched by Lacks’ story. While we have come a long way, it is still critical to keep the community involved” says Gorfine.

Mayo Clinic Biomedical Ethics Research Program, Mayo Clinic Center for Individualized Medicine, Mayo Clinic Office of Community Engagement in Research, African Descendants Mayo Employee Resource Group and Rochester Public Library co-sponsored the Science at the Cinema event.

Learn more about bioethics in precision medicine

Dr. Sharp will present Ethical Challenges in Pre-Emptive Pharmacogenomics (PGx) Testing at Individualizing Medicine 2017: Advancing Care Through Genomics. Register to attend the conference to hear Dr. Sharp and other leading experts discuss the latest research in precision medicine and how it can be applied to improve diagnosis and treatment for many conditions

The Mayo Clinic Center for Individualized Medicine is hosting the sixth annual genomics conference, October 9–10, in Rochester, Minnesota. Register on the conference website.

This article originally appeared on the Mayo Clinic Center for Individualized Medicine blog.