Our second annual symposium featured members of the Henrietta Lacks family Shirley Lacks and Veronica (Robinson) Spencer.  Ms. Lacks is the sister-in-law of the late Henrietta Lacks, and she was good friends with Henrietta’s daughter Deborah.  Veronica (Robinson) Spencer is the great-granddaughter of Henrietta Lacks.

The Lacks family story has become and continues to be a significant source of academic and legal discussion concerning many modern bioethical issues.  At the heart of the story are Henrietta’s cells, which famously became immortalized after physicians biopsied her aggressive cervical cancer in 1951.   As is standard even today, a biopsy taken for clinical care can be used for research without a patient’s explicit consent if the samples are de-identified.  We can quibble whether or not using the patient’s initials “HeLa” to label the cell lines was a sufficient de-identification strategy (hint: it was not; PMID:4942173), but the Common Rule is clear on this issue and has not changed with its recent revision.

According to Rebecca Skloot’s nonfiction book The Immortal Life of Henrietta Lacks, among other sources, the lack of information and economic opportunities were central to the family’s issues with the existence of the cell lines.  The Lacks family was re-contacted in the 1970s for follow-up blood samples drawn by Johns Hopkins University investigators associated with Dr. Victor McKusick’s lab.  Skloot makes it clear in her book that the Lacks family 1) had no idea the cell lines existed until the early 1970s and 2) had no understanding of McKusick’s genetic study.   The Lacks family was under the impression that they were being tested for their mother’s cancer and that they would be receiving results.  Instead, McKusick’s team was trying to establish a genetic marker (G6PD) for HeLa cells by inferring Henrietta’s genotype from the phenotypes of her descendants (PMID:1246620).   McKusick’s study was an important contribution to identifying cell lines contaminated by HeLa (PMID:1246601), but it had nothing to do with testing her descendants for cancer.

This horrible misunderstanding between the Lacks family and McKusick’s team is an example of informed consent gone wrong.   Technically, the Lacks family verbally assented to the blood draw but were not consented for the study associated with the blood draw, an approach that was par-for-the-course until informed consent was formalized and required soon after.  The HeLa case study also provides an embarrassing example of how poorly scientists communicate with participants.  A New York Times article that covered Skloot’s book and the HeLa story recounted an unflattering portrayal of Dr. McKusick in his interaction with family members when they had questions.  A signed copy of Mendelian Inheritance in Man was not the way to start a dialogue with study participants.

To be fair, the spirit and language of informed consent has changed over time due to this and other studies.  Policies and procedures related to privacy have also recently evolved as a result of the HeLa story.  In 2013, three years after Skloot’s book appeared in print, a German group published a manuscript describing the HeLa genome (PMID:23550136) and made these data available via the database of Genotypes and Phenotypes (dbGaP).  On the heels of this publication was an in-press publication from a US group funded by the National Institutes of Health (NIH) (PMID:23925245).  Investigators associated with these sequencing projects did not seek permission or consent from the Lacks family, and NIH did not require this permission prior to funding the study.

Deposition into dbGaP is required of NIH-funded human studies as part of the NIH Genomic Data Sharing Policy.  dbGaP has also evolved to become the de facto method to share data with the larger scientific community regardless of source of funding presuming the consent language allows for this deposition.  In the case of Henrietta Lacks, there was no consent and she was deceased.  To make matters more complicated, her family and their pedigree was now known world-wide.  Consequently, publication of Henrietta’s DNA sequence potentially divulges disease status or risk for her family members.  In light of these major privacy concerns, the NIH sought consent from living members of the Lacks family for the release of these sequencing data (PMID:23925224).  As a result of this process, the sequence is now accessible in dbGaP on a per-project basis following approval from the HeLa Genome Data Access working group.  At least two members of the Lacks family, David Lacks, Jr. and Veronica (Robinson) Spencer, sit on this working group.

Between Skloot’s book and the HeLa Genome Data Access agreement, the Lacks family have become popular speakers for meetings and educational events.  I first saw the Lacks family speak at the 2013 Annual Biomedical Research Conference for Minority Students (ABRCMS) in Nashville, TN where  David Lacks, Jr. and Shirley Lacks represented the family.  The Lacks family has since spoken at the ICB’s North Coast Conference on Precision Medicine (Veronica (Robinson) Spencer and Shirley Lacks) and has revisited ABRCMS in 2016 (Jeri and David Lacks, Jr).  These 2016 events represent only two of more than 100 appearances made by members of the Lacks family in the last few years, providing much needed opportunities for students and investigators to interact with family members affected by research to better understand and appreciate bioethical and privacy concerns and the need for transparent and truly informed consent.

These events also represent a service provided by the Lacks family compensated by speaker fees.  Many have expressed support in the Lacks family’s ability to earn an income somehow associated with the HeLa cells.  Skloot’s book and countless other articles have commented on the cruel irony of the commercial success of the HeLa cells in juxtaposition of the family’s poor financial state and health.  But, again, to be fair, Henrietta’s consent then or even now would not have translated into guaranteed financial gain.  As opposed to commercial laboratories, academic biorepositories like the one established at Johns Hopkins University rely on altruism and the donation of samples and data for research purposes.

The financial injustice angle has had a recent resurgence with anticipation of HBO’s adaptation of the book scheduled for release on April 22, 2017.  Starring and produced by none other than Oprah Winfrey, the movie was made with Skloot as executive co-producer and several of the Lacks family members as (paid) consultants.  As the release date for the movie neared, accusations from disgruntled Lacks family members started to fly.  Earlier this year, two Lacks family members declared a renewed interest in legally seeking compensation for the use of the HeLa cells by Johns Hopkins.  Among other accusations, these Lacks family members also reject the NIH agreement made by the other family members implying it is not valid without their participation.  After the HBO trailer dropped for the movie, the same two family members complained that they disagree with their family’s portrayal, and that they were not paid consultants for the movie (although they were offered and refused).  Oprah and NIH are not having it.

Perhaps the saddest detail of this family feud is the accusation that two of the great-granddaughters of Henrietta Lacks are in fact not biological great-granddaughters.  One of them, Veronica (Robinson) Spencer, spoke to us here in Cleveland.  The accusations are plausible, and Dr. Gonçalo Abecasis at the University of Michigan is working to reconstruct the family pedigree based on DNA from Henrietta Lacks’s cells and her living relatives who consented to providing a DNA sample.  Although more data are needed to confirm or refute the accusations, it is almost certain the damage has been done to this already fractured family with no relief in sight for the foreseeable future.