HeLa case shows importance of patient privacy

Alyssa Fernandez

Henrietta Lacks was an African-American woman who died of cervical cancer in 1951. Just before her death, doctors at Johns Hopkins Hospital took tissue samples of her tumor without her consent and discovered something miraculous — her cells didn’t die. Researchers developed a line of immortal cells dubbed HeLa and distributed them to labs all over the world, giving birth to the biomedical industry and forever changing the landscape of modern medicine.

Lacks’ case is unique and it’s unlikely any of us would go through a similar experience. However, that doesn’t mean we aren’t vulnerable. Our health has become a commodity, therefore, there needs to be a conversation about patient privacy and how we quantify that.

For Lacks, there is no question that researchers had no right to take her cells. The HeLa cells have been used in countless studies and were even instrumental in developing the polio vaccine. Yet, these scientific innovations came at a cost and breached medical ethics, which led me to wonder: Are deceased patients entitled to privacy?

It’s easy to defend what researchers did to Lacks as a necessary evil, the logic being that one woman’s involuntary sacrifice has saved countless lives. Despite the good that came from this, it doesn’t undo the fact that the researchers violated Lacks’ privacy rights.

This is important to consider because many questions concerning medical ethics revolve around the conflict between the greater good versus the individual. Outside of the case of Lacks, this is evident in DNA testing and whether the government or corporations should have access to your genetic information. In fact, each state independently mandates that all newborn babies have their DNA screened for certain genetic disorders. Many states store this data for research purposes. In 2008, some families sued Texas A&M for storing this information without parental consent. So far, there is nothing inherently malicious about genetic databases. All they want to do is collect your DNA and conduct screenings. You know, stuff to help the greater good.

But then there’s corporations who want to monetize your health data. Fitness trackers and health apps are known to sell your data to companies for advertising purposes. If you found someone off the street and asked them if it is ethical to collect health data for research purposes or for advertising, they’d probably justify the former and condemn the latter.

In reality, there is hardly a difference between the two. In terms of privacy, it’s normally only breached if someone is targeting your specific information. But we’re vulnerable to this when that data is stored or sold because then we’re exposed. Individually, your health data means nothing to these public or private entities. They need patterns, a database, information to predict abnormalities or behaviors to reach a large population — unless you’re Henrietta Lacks.

Last Saturday, HBO premiered the movie adaptation of the best-selling book “The Immortal Life of Henrietta Lacks,” starring Oprah Winfrey as Deborah Lacks and Rose Byrne as Rebecca Skloot. Henrietta Lacks may be the titular character, but the movie and book are centered on her family, especially Deborah.

For decades, Henrietta’s family didn’t know what researchers did with her cells and when they finally revealed HeLa to them, it brought on a substantial psychological and physiological burden on them. At one point, the author discovered that a researcher had publicly published Lacks’ genome online and exposed the surviving family’s privacy. The effect HeLa has had on the surviving Lacks family is reason enough for the deceased to retain their privacy. It’s not ethical to value the greater good without the individual’s consent and the story of Henrietta Lacks demonstrates why this is an injustice.

Fernandez is a Spanish and rhetoric and writing Senior from Allen. She is a Senior Columnist.