Bioethics in Brief is a newsletter of the Center for Bioethics and Humanities, committed to promoting clinical health care and health policy which is patient-centered, compassionate, and just. Opinions expressed in the newsletter are those of the authors and do not represent the position of the Center.
The Immortal Life of Henrietta Lacks
Book Review by Joel Potash
Would it surprise you to know that samples of your blood and tissues may be stored in hospitals and laboratories for future research? If you had an operation to remove cancer, do you think your cancer cells should be cultured, studied, and used for research on cancer drugs, effects of radiation, or vaccines, without your informed consent? And whether you consented or not, should you be compensated if your cancer cell-line is marketed and sold to researchers from around the world? Rebecca Skloot’s new book brings these questions to light as she investigates the story of Henrietta Lacks, a 31-year-old mother of five who died of cervical cancer in Baltimore in 1951 and was buried in an unmarked grave near her mother’s tombstone.
Ms. Lacks had received radiation, the standard treatment for cervical cancer at Johns Hopkins Hospital, but unknown to her or her family, her doctors took tissue samples from her cervix and placed them in culture. The cells flourished beyond all expectations, reproducing themselves every 24 hours. Average cells will have about 50 reproductions in a culture medium and then die, but Lacks cancer cells continue to flourish to this day. When Lacks died, Johns Hopkins physicians requested an autopsy, at which time further cancer material was obtained for culture, again without telling her family. Researchers named her cell line HeLa (after her first and last names).
Medical personnel knew her by the pseudonyms of Helen Lane or Helen Larson. There are 17,000 patents involving HeLa cells, and over 60,000 scientific articles have been published about research involving the use of HeLa cells. HeLa cells have led to the discovery of HPV18 (which causes cancer of the cervix), the development of the polio vaccine, diagnostic tests for hepatitis, and advances in in vitro fertilization and gene mapping. Yet Lacks’ family did not learn about this cell line until 25 years after her death.
Between 1951 and the mid 70s, HeLa cells were injected into a variety of patients including prisoners and poor people to see if they caused cancer; the patients were told only that they were receiving cancer treatment. Although the concept of informed consent for medical procedures appeared first in a legal case in 1957, the immorality of performing research on persons without their informed consent was raised in the Nazi war crimes trials in the late 1940s. But informed consent was not routinely obtained for research on patients or their cells during the 50s, 60s and most of the 70s.
The Immortal Life of Henrietta Lacks alternates chapters about the science of HeLa cells with chapters in which the author attempts to interview Lacks’ husband and children, finally winning their trust. The book reminds us that in the 50s, Johns Hopkins had separate entrances and wards for African-American patients. There was also an attitude that indigent patients who received free care owed something to the hospital, and therefore could be subjected to research. Along with the infamous Tuskegee study of syphilis, the HeLa cell research casts a deep historical shadow over the integrity of medical research involving minorities in the U.S.A.
When they finally learned about the cell line, the Lacks family were concerned that HeLa cells’ immortality meant that in some way Henrietta was still alive. They also wondered if the research meant that they had a genetic predisposition to her cancer. They claimed that the nature of HeLa cells and the research was never clearly explained to them. Some family members expressed a desire to sue Johns Hopkins because they were poor and did not benefit from the marketing and sale of HeLa cells, but they never did. For the most part the family seemed proud that their mother’s cells have benefited society in so many ways.
Skloot poses a number of intriguing questions. Should you be able to restrict the use of your tissue? Should you be able to control who has access to your tissue, since genetic information gathered may be harmful to you and your family? Is there a public responsibility to advance knowledge and help others through research? Should patients be told that tissues may be patented and used for profit? Should they receive compensation, such as royalties or tax write-offs? Should patients create their own tissue lines and patent them? What about the millions of blood and tissue samples that go back generations and remain in storage? Some of the problems created by HeLa cells research are now obviated by HIPAA privacy rules and the Genetic Information Nondiscrimination Act.
This book makes fascinating reading and should renew concerns about the ethics of research on patients, their cells, and their tissues. Obtaining informed consent from patients is now the rule for medical care and research, but many questions still remain about exactly what patients understand when they sign these forms. Poor communication from medical professionals caused much suffering for the family of Henrietta Lacks. These events are far less likely to occur today given governmental regulations and law (including HIPAA) and a more robust sense of our ethical duties to patients.