Imagine a situation where a patient’s tumor cells were used for countless scientific experiments—without the patient’s informed consent. Safeguards are in place today to prevent such an ethical breach, but in 1951 Henrietta Lacks and her family weren’t as lucky. Author Rebecca Skloot shared Henrietta’s story in a 2010 nonfiction book, The Immortal Life of Henrietta Lacks, that was adapted into a movie released on April 22, 2017.

The Immortal Cell Line

The book and film are about how an immortal cell line was generated from cervical cancer cells taken from Henrietta in 1951. In this context, the word immortal refers to cells that aren’t subject to the Hayflick limit, which is the point at which cells can no longer divide because of DNA damage or shortened telomeres.

Henrietta’s story raises questions about ethics, race, and genetics. The book encourages the reader to think about the dark history of experimentation on African Americans, the birth of bioethics, and the legal battles over who owns and controls genetic material.

In the story, unbeknownst to Henrietta, some tissue was removed from her tumor and sent to George Gey's lab at Johns Hopkins Hospital to be cultured in test tubes. Gey had attempted for years to get cells to divide continuously and infinitely in the lab so that the scientific community could have an inexhaustible supply of human cells on which to perform experiments. Gey never informed Henrietta that her tumor was being used for research. Despite aggressive treatment, Henrietta died at the age of 31, leaving behind a husband and five young children.

Years later, Henrietta’s children accidently learned that their mother’s cervical cancer cells (called HeLa cells) were being used in research. The cells, and the experiments that were performed with them, led to the creation of a massive for-profit industry. Ironically, Henrietta’s family lived in poverty and never received any of the financial benefits derived from their mother’s tumor cells.

Ethical Considerations With Genetic Testing

The book and film aim to encourage people to think about science and the potential harm unethical choices. The book’s popularity has made it common reading material in high schools and book clubs throughout the country. This is a good thing, because it starts the discussion about ethical considerations and genetic testing.

My practice involves educating and counseling patients about genetic risks for developing cancer. It’s a labor-intensive process, and there’s a limit to how many patients and families I can see in a day or week. Patients are generally scheduled every 90 minutes, but it takes that much face-to-face time just to gather enough information, calculate risks, discuss potential testing and management options, and—most importantly—provide enough information that patients and families can make an informed decision about genetic testing and the implications for their individual situation. Genetic care is complicated. It’s not just about the individual who has testing—it impacts other family members in future generations as well.

The key in genetic counseling is to help with informed decision making. Genetic and genomic science is not inherently good or bad, but there are challenges in how the technology is used. That is the point of The Immortal Life of Henrietta Lacks. Henrietta and her family never had a chance to say yes or no to how the cells from her tumor were used. They deserved that information and the opportunity to make an informed decision.

One of the most challenging aspects of my role is to be sure that patients understand the forms they sign prior to submitting a sample for genetic testing. Forms vary from company to company, but most have a fair amount of fine print. If I put the form in front of most patients, they’ll sign it and not ask many questions. I feel a responsibility to be sure they understand the process and the importance of their decision.

Almost all of the forms deal with specimen retention to some degree, asking if the individual gives permission for the lab to use the specimen to better understand some aspect of genetic science or assist with variant reclassification. In most cases, patients can choose to opt out of these studies. Most families, in my experience, want to help others and will opt in. The important point is that they make that decision.

Genetics has the power to transform cancer practice from prevention and early detection through treatment. This genetic knowledge comes from countless individuals and families who participate in gene linkage studies or tumor specimen studies. As healthcare providers, we have a responsibility to be sure that our patients and their families understand how genetic information is used and offer their consent to allow further research on tissues and specimens. By following ethical considerations, we can ensure that Henrietta Lacks’s story never happens again.