“Because of Henrietta Lacks, millions of people are still walking around the earth” (David Lacks)
The Immortal Life of Henrietta Lacks is a book that EVERYONE should read – especially health professionals. It tells the story of a poor black woman who died a dreadful, painful death from cervical cancer in a time where palliative care was not yet a focus. Despite her death, her cells live on and have saved millions of lives through research, development of immunizations and new chemotherapy. Henrietta’s story is remarkable and highlights the importance of consent and ethics in research. The Lacks family is even more amazing as they learned of the use of her cells many years after her death, accept the fact that her cells were taken without consent and are proud of the difference the HeLa cells have made.
The introduction by scientist, Dr. Paola Marignani, with ties to the local McMaster University, was using the HeLa cells in her research. In 2005, she began to hear the story about Helen Lane and later learned that these cells, taken without permission, had belonged the Henrietta Lacks. This book is a mandatory read for those working in her laboratory and she had stopped using these cells… until she got permission which the family gracefully gave after a question was asked by an audience member.
David and Jeri, two of Henrietta’s grandchildren appreciated the warm welcome from Toronto. They had traveled North with their families and were looking forward to visiting the Ripley’s aquarium the next day. The historic Glen Gould Theatre at the CBC building was packed with an audience keen to learn and hear their story. The siblings shared a slide show, some laughs and the ongoing impact on their family members who described Henrietta as “a giving woman in life and a giving woman in death”.
In the slide show they showed pictures of their Aunt Dale with author Rebecca Skloot, their dad looking at slides of his mother’s cells under a microscope and pictures of the Lacks farm in Clover. There is now a museum with an exhibit about Henrietta and a gravestone was donated to mark the place of this quiet woman who has impacted the world. They shared how Bobette Lacks had visited the doctor to discover that Henrietta’s cells were being used for research. While John Hopkins Hospital has not formally apologized, they do events to share Henrietta’s story and have introduced a STEM (science, technology, engineering and math) symposium for youth. Their father had even accepted an honorary degree for Henrietta!
The family learned much of the history of their grandmother through Rebecca Skloot’s book. The cell genome sequence was discovered, without permission, in 2013. To use it scientists must apply to a board including Lacks family members. The family acknowledged that the cells had been taken “in a time when things were different” and they feel that their grandmother would have been proud of the difference her cells have made in eradicating polio, providing an immunization for HPV and treating cancers,. They feel that she would have wanted to share her cells and make a difference.
The Lacks family has met the former President Barack Obama and media mogul Oprah Winfrey. Oprah played their aunt Debra in the movie (interestingly Debra had always said that if it was made a movie, she would want Oprah to play her but sadly she died before the book became a movie). They felt that the movie shared the story well including “the good with the bad” but wish that it had been a mini-series. They are proud of the acknowledgments to their late grandmother which include a highway marker, a highschool, street sign, the book, movie and conferences which are dedicated to Henrietta.
The family chooses to move forward and promote the positives. They encourage patient advocacy, the importance of being informed of patient rights and getting involved. They noted that it is a “great feeling to visit colleges and universities” as they work to “change the narrative and engage the scientific community”. Their last message was to:
“Treat everyone like you would want to be treated or want your family to be treated” (Jeri) and to “Try and make a difference, try to make it positive and work together to improve life” (David)
It was a great evening in Toronto. David and Jeri remained for pictures and book signings and spoke with members of the crowd that included health professionals and researchers. This book and their talk certainly made me reflect on the importance of research ethics and informed consent!
The siblings were engaging speakers and represented a family that had experienced so many struggles yet despite adversity were caring, giving and generous in the sharing of their family history. I encourage readers to get a copy of this book and when your children have their HPV injections or you hear of individuals having cancer treatments, please be thankful to Henrietta Lacks who has made a huge difference in the world!