by Joan Rachlin, JD, MPH, Executive Director
One of my close friends runs the Civil Rights and Restorative Justice Project at Northeastern University School of Law, a project that seeks to achieve justice for civil rights era crimes that went unpunished. Last year, I attended a screening of an extraordinary film about their work, The Trouble I’ve Seen, and was struck by the determination of the students and professors who reopened these cold cases and by the comfort that even small efforts at redress and reconciliation can bring to victims and/or their families.
My reaction to seeing that film came flooding back on August 7 when I read about an agreement that Francis Collins, MD, PhD, director of the National Institutes of Health (NIH) and a highly respected genetics researcher, entered into with the family of Henrietta Lacks, a strong and spirited African American woman who died from cervical cancer in 1951. Cells obtained from Ms. Lacks during a routine biopsy were found to possess unique properties. Her cells grew freely and endlessly in cell culture, which allowed researchers to utilize the cell line for decades of research projects, including, notably, the development of the polio vaccine and the discovery of human telomerase. To this day, Ms. Lacks’ cells remain in use, according to Dr. Collins, in, “almost every molecular biology lab” in existence. More than 75,000 papers have resulted from the almost 65 year history of studying the HeLa cell line, and that research has yielded great financial benefits for many researchers.
The trouble is that Ms. Lacks’ cells were obtained without her knowledge or consent, and, to compound that injustice, her family was not told about the HeLa cell line until one of her daughters read about it more than 25 years after Ms. Lacks’ death and began asking questions.
Recently, in March 2013, German researchers sequenced the genome of the HeLa cell line, and, without telling or consulting the family, posted the data online. In doing so, researchers not only revealed Ms. Lacks’ genome for all to see, but also possibly shed light on the genetic predispositions or traits of surviving members of her family. A firestorm of protest followed, and the researchers reached out to the Lacks family with the help of Rebecca Skloot, author of the best-selling book The Immortal Life of Henrietta Lacks. The publication of Ms. Lacks’ genome reignited the debate that has engulfed the use of the HeLa cell line since Ms. Skloot’s book was first released. Issues surrounding the consent and ownership of tissue, genetic privacy, the permissible and impermissible uses of archival samples, and whether tissue or other data can be truly anonymized, were all moved back to the front burner in the wake of the German publication, which was ultimately removed from the web after the public outcry.
This latest round of debate over the online publication of the HeLa cell genome prompted Dr. Collins and his colleagues to seek a remedy for the Lacks family. His account of the decision can be found in a recent article in Nature, which lays out the case for protecting the dignity, privacy, and well-being of research subjects and, where appropriate, their family members as well. In an interview in the same publication, Dr. Collins reminded readers of the importance of ensuring “respect for persons,” a principle defined in The Belmont Report, and one which is, no doubt, familiar to the PRIM&R community. He added: “The most appropriate way to show respect for persons is to ask. Ask people, ‘Are you comfortable having this specimen used for future genomic research, for a broad range of biomedical applications?’ And if they say no—no means no.”
The principle of respect for persons is one that Dr. Collins has demonstrated throughout his work with the Lacks family. In the interview, he spoke about spending a great deal of time drawing diagrams of DNA and explaining to them the genomics of cancer and what made Ms. Lacks’ cells so unique. The time and care that Dr. Collins spent with the family displayed great respect for them, and he augmented that respect by offering his public praise for their ability to handle a very complex situation.
I would like to second his expression of admiration for the Lacks family, and add my own admiration for Dr. Collins, who proved that there is no statute of limitations on saying “I’m sorry,” “We goofed,” “We want to make it right,” and/or “You deserved better.” And, there’s certainly no statute of limitations on modeling respect for persons, beneficence, and justice, all of which were at the core of Dr. Collins’ actions both in this case and throughout his career.
The agreement provides for the creation of a committee that will be charged with reviewing applications from researchers seeking access to the HeLa cell genome. Two members of the Lacks family will sit on this committee. However late and however limited, this is an important step, and not simply a symbolic one, in rectifying a longstanding wrong.
There’s an iconic saying in many advocacy movements that goes “you can’t talk about us, without us,” a variant of which is “nothing about us without us.” Dr. Collins has finally given life to that mantra by involving Ms. Lacks’ descendants in matters that affect and concern them. Thank you, Henrietta Lacks, for your immortal gift to science and health. Thank you to the Lacks descendants for being determined to seek the respect and justice they were due. And thank you, Dr. Collins, for modeling the ways in which respect for persons and the other Belmont principles can be made concrete.
Onward to redress other past injustices—it’s never too late, after all.
Justice delayed is not always justice denied: The Lacks family and the National Institutes of HealthTags:
by Joan Rachlin, JD, MPH, Executive Director