Skip to content

Medical Data Privacy Laws Owe a Debt to Henrietta Lacks

TRU Staffing Partners February 7, 2023 at 7:00 AM

TRU’s Black History Month Spotlight

Imagine if this happened to you: you have a terminal disease, and a doctor removes cells and tissues from you without your consent or knowledge. The medical world then uses your cells for decades in research and publishes your medical history again and again after your death without your family’s knowledge or consent. The medical community also uses your medical data for commercial purposes, and openly discusses your genetic information in a variety of public ways, all in the name of science.

This happened to a black woman named Henrietta Lacks in 1950s America — and although the cells taken from her during her battle with cervical cancer were used for the public good and ultimately saved countless lives — she never consented to be a part of history. Lacks’ doctor at Johns Hopkins Hospital in Baltimore biopsied cells during treatment and they were cultured by the hospital’s cell biologist. Lacks was not paid for any of the cells’ use, even though they were named HeLa, after her.

Lacks’ cells grew to be very resilient, and therefore useful to the medical community. HeLa cells were unique, growing by the millions, and they were commercialized and distributed worldwide to researchers, resulting in advances in medicine, including treatments for many diseases. But her personal medical privacy was completely eroded in the process.

From Legal and Ethical to Unfathomable 

It was legal 60 years ago to take a person’s cells, tissue, and DNA without their consent. It was the norm to use these materials in research, but as time went on and Henrietta’s medical information was shared repeatedly by dozens of medical professionals, it became unethical. It took two decades after Lacks’ death for her family to become aware that her cells were being used. And as their knowledge of the situation grew, and data privacy laws became prominent, they only recently were given the chance to control who uses her cell samples — after they sued for it.

The fact that Henrietta Lacks’ case is now so shocking is thanks to current data privacy laws. Today, most of us cannot imagine having our medical histories on public display without prior consent. Data privacy laws provide a real opportunity for everyone to change harmful, obtrusive past practices. Two years ago, the Henrietta Lacks Enhancing Cancer Research Act of 2019 became law. The law required a Government Accountability Office report about how federal agencies are helping underrepresented populations to take part in federally funded cancer clinical trials.

Data Privacy Builds Trust, Enables Security

The Lacks family’s experiences showcase the immense importance of data privacy as an overall industry and serves as an inspiration to privacy professionals who want to change the world’s narrative on what belongs to an individual. Organizations must now set all business practices around protecting customer data, updating security measures, and avoiding data breaches. Specifically: The medical community now considers a patient’s rights above the common good.

Being a data privacy professional means looking at the past, determining what needs to change within an organization, and helping to affect those changes in the future. Privacy used to be a hallmark of the legal industry, where lawyers advised on where and how to set privacy parameters. But it is now an industry of many types of professionals within an organization that include IT, engineering, business development, marketing, and human resources.

TRU Staffing Partners specializes in data privacy career placements around the world today. Even in a recession, organizations are clamoring for data privacy talent at every level. However, privacy staffing varies based on the state of a data privacy program’s maturity. Each company has different regulatory requirements. Access to successful, proven people and approaches to building, growing, or maintaining novice or highly complex data privacy teams is a mission-critical need — and often elusive.

TRU represents the best and brightest of the industry’s professionals — and can curate candidates from full-time, part-time, contract-to-hire, temporary, and executive levels. If you are an employer, TRU’s privacy specialists will connect you with the perfect job-seeker to fill your open roles. If you are seeking an exciting new privacy role, see TRU’s open requisitions and apply for one that best fits your needs, or apply for representation here. Being a part of an industry that builds trust and enables people to feel safer is a very rewarding profession to work within.