The modern medical world owes a lot to HeLa cells: the polio vaccine, cancer treatments and in vitro fertilization, to name a few. It was the first immortal cell line, or group of tissue samples that could survive in a lab – and reproduce indefinitely. This characteristic made the cells ideal for research environments. HeLa cells became a catalyst for medical progress, from studying gene mapping to cancerous activity, and the cells remain in high demand today, even 60 years after the initial sample was collected.
Yet the source of those cells, Henrietta Lacks, never gave consent for her tissue samples to be used in research. And her family didn’t either.
Rebecca Skloot’s 2010 best-selling book, The Immortal Life of Henrietta Lacks, revealed the ethical dilemmas and complex social issues interlaced with HeLa cells and medical research more broadly: concerns of consent, privacy and compensation, among others.
Debra DeBruin, Ph.D., director of the University of Minnesota Center for Bioethics spoke with Health Talk about changes in medical research since Skloot’s book brought to life the human story behind the HeLa cells.
Health Talk: What are some of the ethical issues presented in the case of Henrietta Lacks?
DeBruin: Consent is surely one ethical issue; privacy is another. As Rebecca Skloot points out in the book, Ms. Lacks was publicly identified as the source of HeLa cells decades ago. Recently, researchers sequenced the genome of HeLa cells, published their results and posted them in a public database – this affects the privacy rights not only of Ms. Lacks but also of members of her family. In addition to being concerned about privacy and consent, we should also consider if people who provide tissues for research benefit in any way. Some of the real significant issues in this case relate to a lack of respect for Ms. Lacks and her family, as well as justice, race and social class. The HeLa cells were fueling modern medical innovations, yet the Lacks family didn’t have access to basic care back then. And they weren’t aware any of this was happening.
HT: Thinking about the book today, where has it made the most lasting impact?
DeBruin: Initially, taking samples from Ms. Lacks and using them for research without her consent didn’t violate any legal standards. But the rules have changed since then, and they are still changing. The National Institutes of Health recently modified requirements for consent for use of tissues and related medical data in research. Now, researchers must comply with a new policy that promotes sharing of genomic information in a way that protects privacy of people who donated samples for research. The policy also requires consent for future use of all tissues – even if the samples are de-identified, meaning without any personal information included. In addition to these legal considerations, the book did a lot to raise awareness about not only the scientific story about HeLa cells but also the ethical issues involved in the story. It was a very widely read book – it captured the attention of researchers, educators, students and the general public.
HT: Learning from the Lacks case, how can we engage in medical research ethically today?
DeBruin: One of the fundamental principles that should guide our work in clinical care and research is respect for persons. That means respecting the right for patients to make their own decisions about matters that affect their wellbeing. It also means respecting privacy wishes. Not everyone has the same attitude about medical records. Some people are more willing to share personal information than others, and that is a decision everyone can make for him or herself. We also need to be sure that people are protected from the potential risks research might pose.
HT: What can researchers or medical professionals take away from this story?
DeBruin: Researchers can take away an awareness of the impact that research can have on people. Rebecca Skloot does a great job of capturing different perspectives on the issues. Hearing a story like Henrietta Lacks’ takes us out of a purely scientific research perspective and shows us how research matters and affects people’s lives. You can step outside your own view and understand the issues in a more robust way.
The Lacks family will be speaking about informed consent and how HeLa cells have impacted their lives on Friday, November 14, at 9:45 a.m. in Northrop Auditorium. The event is free and open to the public. Details here.