Dr. Jedan Phillips, center, discusses the lack of patient advocacy in the case of Henrietta Lacks during one of the student workshops.
STONY BROOK, N.Y., April 12, 2013 – More than 230 Suffolk County high school students from eight school districts learned about bioethics, disparities in healthcare, patient advocacy and related topics from Stony Brook University faculty, educators from the Three Village Central School District and other healthcare professionals at the first annual “Living Book Project: A Day of Conversation, Exploration and Reflection Inspired by Rebecca Skloot’s The Immortal Life of Henrietta Lacks.” Stony Brook University in partnership with the Three Village Central School District hosted the educational event on April 5 at the Charles B. Wang Center.
Prior to the event, each student received a copy of The Immortal Life of Henrietta Lacks, a New York Times best-seller about a woman with cancer whose cells were extracted from her tumor and used for research without her permission in 1951. Her cells – now known worldwide as HeLa cells – became vital to a medical revolution for vaccines, gene mapping and other developments. The theme of the book served as a springboard to workshops on important issues in science, society, and ethics.
More than 230 Suffolk County high school students from eight school districts participated in the Living Book Project.
Many of the students selected for the program come from high needs school districts as part of Stony Brook’s ongoing effort to educate students to healthcare and science topics, and careers. The participating school districts were Amityville, Brentwood, Central Islip, Longwood, Riverhead, Three Village, William Floyd, and Wyandanch. A Stony Brook University Presidential Diversity Mini-Grant: “SEED-Students Empowered by Embracing Diversity” was the primary source of funding for the event.
“This educational program brought together an ethnically and economically diverse group of students to foster conversation, positive interaction and teamwork to answer difficult questions and consider different perspectives to concepts in medicine and society,” said Dr. Aldustus Jordan, one of the event organizers and Associate Dean for Student Affairs at Stony Brook University School of Medicine. “For many it was the first time they grappled with such issues, and our faculty found the students to be intellectually curious, insightful and eager to learn.”
Jump-starting the day was an adaptation of the book with a performance by local actors and Stony Brook students. The Living Book play brought to life the characters of Rebecca Skloot (the author), Henrietta Lacks, her family and the doctor who used her cells for research.
“This performance is designed to be visual, dynamic and provocative,” said Lauren Kaushansky, Lecturer, Professional Education Program in Stony Brook’s Department of History, and the playwright and director of the adaptation. “We asked the students to take the scientific, social and ethical issues brought forth in Ms. Lacks’ story and apply them to the workshops and ask themselves, ‘What is different today?’ ”
During the Living Book play, the life of Henrietta Lacks and ethical issues surrounding her story came to life. From left, some of the characters: Stony Brook student Sarah Georges playing Henrietta Lacks; Stony Brook student Ashley Cepin as Deborah Lacks, Henrietta’s daughter; and actress Sue Ann Dennehy playing Rebecca Skloot, author of the book.
For example, during the workshop titled “Does This make Sense to You? Advocating for Your Healthcare,” Jedan Phillips, MD, Clinical Assistant Professor in the Department of Family Medicine, led a discussion about the lack of patient advocacy in the case of Henrietta Lacks.
“Students were very receptive to understanding why patient advocacy and asking healthcare providers questions are so important,” said Dr. Phillips. “They even cited examples in their own lives such as how an elderly grandparent with dementia benefited from having younger family members attend doctor visits.”
During “How Have HeLa Cells Changed Our Lives?” led by Jennie Williams, PhD, Associate Professor in the Department of Preventive Medicine’s Division of Cancer Prevention, the students learned about the vast contributions of HeLa cells to science, including new applications such as in vitro cancer studies.
“The students also acquired an appreciation of the moral dilemma associated with the initial use of Ms. Lacks’ cells and the opportunities it afforded in the pursuit of scientific endeavors,” said Dr. Williams.
Students also expressed their thoughts about the book in an artistic manner. Ward Melville High School art students created sketches and paintings depicting advances in medicine and bioethical issues related to the plight of Henrietta Lacks. The art pieces were displayed in the Wang Center.
“The event was a great way for different perspectives to come together,” said Ward Melville senior Frankie Gattuso. “From what was shared from both professionals and students, it is alarming to note that the medical miscommunication that transpired in Henrietta’s life can still occur in today’s world.”
At the close of the program, the students were challenged to develop a sequel to the Living Book play and participated in a performance in which they provided answers to the question, ‘What is different today?’ In voices depicting them as the next generation of scientists, doctors, and patients, they provided declarations on stage as to what they would do to continue improving healthcare, bioethical practices, and patient advocacy.