After a year and a half of pipetting, running gels, and peering through microscopes, I finally submitted my undergraduate thesis last month. In it, I was looking at the role that particular proteins played in driving inflammatory bowel disease, a painful, chronic disease that damages the intestines.

The core technology that drove my thesis was organoid cell culture, which allowed me to perform all sorts of experiments on models of real human tissues. I could clone them, infect them, and edit their DNA, almost as if I were experimenting on the gut cells of an actual patient. Day to day, I didn’t think much of it; I went in, planned new experiments, conducted various assays, and analyzed results. Sometimes however, a nagging feeling crept into my mind – I am messing with an actual person’s gut – in a way that felt a bit more real than for regular cell cultures flat in a plate. Of course, I only knew the organoids by number; any and all information about the patients behind the organoids was strictly guarded. But in experimentation with human cells, I knew that likely wasn’t always the case. My exploration of this feeling led me back to one of the most fascinating and troubling stories I’ve ever read, which profoundly changed the way I think about ethics and research — The Immortal Life of Henrietta Lacks, documented by Rebecca Skloot.

In the “colored” ward of Johns Hopkins Hospital in spring 1951, an African-American woman named Henrietta Lacks was admitted for cervical cancer treatment. As had become routine at the hospital, during treatment for the tumor, her doctor biopsied samples of her tumor — without her knowledge or consent. Those samples would give rise to one of the greatest scientific technologies of the 20th century: the first human immortalized cell line. While most cells from other patients would die after a few cycles of growth and division, Henrietta’s cells never stopped dividing: they were effectively “immortal.” These cells could therefore be cultured in laboratories indefinitely, allowing scientists to conduct all sorts of experiments they couldn’t do before.

The range of discoveries made with her cells was absolutely staggering. The polio vaccine. The telomere theory of aging. The fact that we have 23 pairs of chromosomes and that defects in them can lead to terrible diseases. The list goes on and on.

However, over the course of the next twenty years, Henrietta’s identity was lost. After the tissue had been collected from her tumor, her cells were labeled with the name “HeLa,” derived from the first two letters of her first and last names. Journalists and scientists alike ventured guesses about the name and identity of this mysterious woman, but it was only in 1970 that her actual identity was revealed to the world. 

While it might seem that recognizing Henrietta was a step in the right direction, the acknowledgement actually led to a cascade of harassment towards her family and opened up a slew of ethical questions about medical research. This public revelation had not only divulged her identity, but also that of her family – her siblings, children, and all those who carried the DNA found in the HeLa cells. Suddenly thrust into the spotlight, Henrietta’s family realized that their mother’s cells had been used by thousands of scientists and institutions, without their knowledge or consent. While Henrietta’s cells had generated millions of dollars in profits for the companies and researchers who had used HeLa cells for patented drugs and discoveries, her family members had nothing to show for it – they couldn’t even afford basic health insurance. 

The exploitation didn’t stop there. Now that Henrietta’s identity had been revealed, researchers immediately sought out her family members, eager to obtain their blood and DNA as well to drive new discoveries. Instead of taking the time to explain all of these issues to Henrietta’s family however – most of whom did not even know what a cell was – researchers just asked to draw blood from the family members, letting them believe that they were being tested for a cancer like Henrietta’s. From that initial biopsy onwards, Henrietta and her family had continually been left behind – ignored, misinformed, and taken advantage of.

Their story spoke to a much larger trend of medical researchers exploiting African-Americans. These interactions with Henrietta’s family came right on the heels of revelations about the Tuskegee Study, where over the course of four decades, hundreds of black men with syphilis were lied to and denied treatment simply so that researchers could better understand the effects of the disease. Johns Hopkins itself had had numerous racial controversies, with tales flying around the African-American community of doctors lying to and experimenting on black patients. However, the story that many of them still hold up as Johns Hopkins’ worst offense is the story of Henrietta Lacks – “a black woman whose body, they say, was exploited by white scientists.”

Of course, circumstances have changed since Henrietta’s time. Nowadays, patient samples, such as the biopsies used for my project, are only taken after completing a thorough vetting process and receiving informed consent from the patient. Still, the word “informed” is problematic here – because how far can patient knowledge truly extend? As the system currently stands, patient consent is only taken at the very beginning of the research process. Patients have no ability to track where their samples are going after this initial consent; they could be used for experiments the patient could never have expected.

Most concerningly, advances in genomics will render the de-identification of biological samples and thus the protection of sensitive genetic information much more difficult. Current legislation says that as long as samples are not directly labelled with a patient’s name, they can avoid complicated regulations associated with patient privacy. This is markedly lacking, and is particularly unequipped to deal with new capabilities of identifying patients through their DNA. Additionally, these laws do not apply to commercial or privately-funded research – which makes up the bulk of tissue research. There are some downstream protections in place, like the Genetic Information Nondiscrimination Act of 2008, which prevents insurers and employers from using genetic information against their employees and payees respectively. However, this act is still limited in scope, as it does not regulate third-party usage in any form. These protections are not at all sufficient to truly protect patient privacy and in turn respect their expectations around consent.

Human samples are crucial for biomedical research; without it, my projects and thousands of others like it would be impossible. However, in the light of Henrietta’s story, it becomes apparent how exclusionary this process can be. My research might one day lead to a successful therapeutic for IBD, which could drastically improve the lives of the millions of people suffering from the disease. However, as it stands now, the patients whose cells made that therapeutic possible will be forgotten, with no real ability to benefit financially from their contribution or to even understand where all their information goes — whether it be to other labs or pharmaceutical companies. As scientific technologies continue to develop, issues around patient consent will only become more and more complicated and pressing. Now more than ever, we need to convene to discuss the ethics of human biospecimens, enact legislation that empowers patients, and redefine our understanding of consent.