By Ann Bonham, PhD
Today, in some community, a 31-year-old African-American woman will be diagnosed with breast cancer. On average, she will present with her cancer at a younger age, develop a more aggressive tumor type, present at a more advanced stage, and face a slimmer chance of survival than her white counterpart. Some of this will be due to an innate biological and genetic predisposition, and some will be due to later presentation as a result of mistrust in the health care system and lack of confidence that biomedical research could help save her life or the lives of others.
How will we treat this generation’s Henrietta Lacks?
A little over six decades ago, in 1951, Henrietta Lacks, another 31-year-old African-American woman, was diagnosed with cervical cancer. She, unknowingly and without her consent, made a profound and enduring contribution to the health of hundreds of thousands of individuals, through cells (later termed HeLa cells) cultured from her cervical cancer tumors — cells that had the unique ability to stay alive in culture and grow indefinitely. Henrietta died shortly thereafter. Her cells gave rise to over 70,000 research studies, providing breakthroughs from how cells in the body function in health and disease, to the development of vaccines and new treatment approaches for cancer. Another enduring contribution, made visible by Rebecca Skloot in her book, The Immortal Life of Henrietta Lacks, was to prompt a larger public conversation about privacy and consent of patients in medical research.
This month, when Henrietta would have been in her 92nd year, her family made a second profound and selfless contribution to biomedical research, by knowingly and actively engaging the NIH to put in place a process that would encourage (although not require) researchers to honor the privacy and dignity of Henrietta Lacks and at the same time to allow the publication of research that sequenced the HeLa cell genome — research that could lead to medical advances that save the lives of countless others.
Deciphering the HeLa cell genome was made possible by exponential growth in gene sequencing technology, which has also advanced our understanding of how genetic variations influence diseases and responses to medical treatments — getting us closer to personalized medicine. Today, genomic data can be categorized with respect to disease-related genes, and linked to clinical data, family history, and individual-provided information. These immense technological gains have shined an increasingly bright spotlight on the gathering and sharing of genetic data.
Now, the ability to identify individuals by working back from their genetic data is not abstract but a real possibility. As a result, informed consent based on the expectation of de-identified samples is an increasingly tenuous notion. The Lacks family confronted the issue of consent head-on by insisting on inclusion in the scientific process, and the result is the newly formed HeLa Genome Data Access working group at the NIH, on which two members of the Lacks family will serve. The group will review requests for access to whole-genome HeLa cell data deposited in an NIH database for medical research, and help ensure that any resulting publications using the data will recognize Henrietta Lacks and her descendants.
The story of Henrietta Lacks and her family is playing out at the intersection of a handful of the most charged issues in health care and biomedical research today:
- the struggle for policies to keep pace with technological change while protecting the safety and privacy of human participants in research
- the heightened privacy concerns specific to research with genetic data
- the desire to make basic and clinical research studies more representative and inclusive, in the face of continued, historically warranted wariness of minorities, including African-Americans, to participate in research in general and in genetic research in particular
- the unequal distribution of the benefits of research, paired with the disproportionate burden of disease on African-Americans and other minorities, both by under-explored molecular differences and societal and environmental inequities.
Henrietta Lacks unwittingly became part of the medical research ecosystem in 1951 and has since been embraced as the “face” of the movement to rework research consent and privacy considerations. Her story continues to inspire passionate discourse on the appropriate and ethical treatment of individuals by the health care system and medical research. Her family has done its part by advancing biomedical research in a way that preserves the consent, privacy, and dignity of Henrietta Lacks and her family.
Now it is time for us to do our part. Can we stand on the shoulders of Henrietta Lacks and her family to actively answer the concerns about genetic discrimination; resolve this legacy of mistrust, abuse, and exclusion; and grapple with the concerns about privacy, so that a 31-year-old African-American woman with breast cancer in 2013 will have the same benefits of major medical findings from research — genomic and otherwise — as her Caucasian counterparts?