We have written before about important technological ethics issues, including a series of guest posts by Kord Davis, the author of “The Ethics of Big Data.” We have also provided the consistent opinion that technologists, including you dear reader, will increasingly be called on to help society think through the increasingly serious ethics issues that technology is forcing humanity to think through. With this post we want to highlight a critically important lesson playing out in society right now, so you can track the historical example and think through how to handle things better when you confront similar situations today.
The subject of this post is the late Henrietta Lacks. This woman has touched you and those you love. Her story has been told before, including in a book endorsed by Oprah titled “The Immortal Life of Henrietta Lacks” Here is how the author summarized this story in an excerpt at Oprah’s site:
When Henrietta Lacks was diagnosed with cancer in 1951, doctors took her cells and grew them in test tubes. Those cells led to breakthroughs in everything from Parkinson’s to polio. But today, Henrietta is all but forgotten. In an excerpt from her book, The Immortal Life of Henrietta Lacks, Rebecca Skloot tells her story.In 1951, at the age of 30, Henrietta Lacks, the descendant of freed slaves, was diagnosed with cervical cancer—a strangely aggressive type, unlike any her doctor had ever seen. He took a small tissue sample without her knowledge or consent. A scientist put that sample into a test tube, and, though Henrietta died eight months later, her cells—known worldwide as HeLa—are still alive today. They became the first immortal human cell line ever grown in culture and one of the most important tools in medicine: Research on HeLa was vital to the development of the polio vaccine, as well as drugs for treating herpes, leukemia, influenza, hemophilia, and Parkinson’s disease; it helped uncover the secrets of cancer and the effects of the atom bomb, and led to important advances like cloning, in vitro fertilization, and gene mapping. Since 2001 alone, five Nobel Prizes have been awarded for research involving HeLa cells.
There’s no way of knowing exactly how many of Henrietta’s cells are alive today. One scientist estimates that if you could pile all the HeLa cells ever grown onto a scale, they’d weigh more than 50 million metric tons—the equivalent of at least 100 Empire State Buildings.
Today, nearly 60 years after Henrietta’s death, her body lies in an unmarked grave in Clover, Virginia. But her cells are still among the most widely used in labs worldwide—bought and sold by the billions. Though those cells have done wonders for science, Henrietta—whose legacy involves the birth of bioethics and the grim history of experimentation on African-Americans—is all but forgotten.
Read more: http://www.oprah.com/world/Excerpt-From-The-Immortal-Life-of-Henrietta-Lacks_1#ixzz2bJibv4QO
The story is back in the news today because of a press release by NIH, which I have pasted below. As you review it, consider the ethics lessons associated with this story. Samples of her living tissue were taken without her permission. They were then cultured and live on today in labs around the world where their study have impacted treatments for major disease and have been used in ways no one could have imagined when they were taken. Advanced in data analysis, including Big Data approaches to bioinformatics have allowed researchers to sequence the DNA from her cells and learn things about her that she never gave permission to be known. Some of these things should have been private. Some can have negative consequences for her living family.
There are Big Data ethics issues here of the first order. My suggestion: read through the below and think to yourself what is right and wrong and what lessons you should take from this. And as you do think with love and respect for Henrietta Lacks and her family. We own them all more than we can ever repay.
From NIH:
The National Institutes of Health today announced in Nature that it has reached an understanding with the family of the late Henrietta Lacks to allow biomedical researchers controlled access to the whole genome data of cells derived from her tumor, commonly known as HeLa cells. These cells have already been used extensively in scientific research and have helped make possible some of the most important medical advances of the past 60 years. These include the development of modern vaccines, cancer treatments, in vitro fertilization techniques, and many others. HeLa cells are the most widely used human cell lines in existence today. Access to the whole genome data of these cells will be a valuable reference tool for researchers using HeLa cells in their research.
“Just like their matriarch, the Lacks family continues to have a significant impact on medical progress by providing access to an important scientific tool that researchers will use to study the cause and effect of many diseases with the goal of developing treatments,” said NIH Director Francis S. Collins, M.D., Ph.D.
Multiphoton fluorescence image of cultured HeLa cells with a fluorescent protein targeted to the Golgi apparatus (orange), microtubules (green) and counterstained for DNA (cyan). NIH-funded work at the National Center for Microscopy and Imaging Research.Credit: Tom Deerinck
In the Nature Comment, Dr. Collins and NIH Deputy Director for Science, Outreach, and Policy Kathy L. Hudson, Ph.D., describe their collaboration with the family to develop the new policies and also examine some of the larger questions about protection of research participants in the expanding field of genomics research.
“Besides their priceless contributions to biomedical research over the past 60 years, Mrs. Lacks and her family are now serving as a catalyst for policies that advance science, build trust, and protect research participants,” said Dr. Hudson.
The understanding reached with the Lacks family respects their wishes to enable scientific progress while ensuring public acknowledgement of the enormous contribution made by the late Henrietta Lacks. In addition, the understanding gives the Lacks family a seat at the table in reviewing applications for controlled access to Henrietta Lacks’ whole genome data.
“The HeLa genome is another chapter to the never ending story of our Henrietta Lacks,” said Lacks family spokesperson and Henrietta’s granddaughter Jeri Lacks Whye. “She is a phenomenal woman who continues to amaze the world. The Lacks family is honored to be part of an important agreement that we believe will be beneficial to everyone.”
In the same issue of Nature, a team headed by Jay Shendure, M.D., Ph.D., of the University of Washington, Seattle, published a whole genome analysis of the CCL-2 strain of HeLa cells. That paper, which acknowledges the contributions of the Lacks family, pieced together the complex, rearranged genome of the HeLa cells and identified an insertion of the human papilloma virus near an oncogene that may explain the aggressiveness of Lacks’ cancer.
Circumstances Leading to the NIH Policy
Scanning electron micrograph of an apoptotic HeLa cell using a Zeiss Merlin HR-SEM. NIH-funded work at the National Center for Microscopy and Imaging Research. Credit: Tom Deerinck
Earlier this year, researchers in Germany published a scientific paper that described the first sequence of the full HeLa genome, comparing the DNA of HeLa cell lines with that of cells from healthy human tissues. That work triggered strong reactions from researchers, patient advocates, and bioethicists who were concerned it violated the privacy of the Lacks family because of the potential to identify the family’s possible disease risk. When the Lacks family expressed concern to the German researchers about what these data might reveal about their disease risk, the data were removed from public view.
“The sequencing and posting of the HeLa genome brought into sharp relief important ethical and policy issues,” said Dr. Collins. “To understand the family’s perspectives, we met with them face to face three times over four months, and listened carefully to their concerns. Ultimately, we arrived at a path forward that respects their wishes and allows science to progress. We are indebted to the Lacks family for their generosity and thoughtfulness.”
The HeLa Genome Data Use Agreement
The new controlled access policy for full genome sequence data from HeLa cells will give the Lacks family the ability to have a role in work being done with the HeLa genome sequences and track any resulting discoveries. Under the policy, biomedical researchers who agree to abide by terms set forth in the HeLa Genome Data Use Agreement will be able to apply to NIH for access to the full genome sequence data from HeLa cells. Along with representatives from the medical, scientific, and bioethics communities, two representatives of the Lacks family will serve on NIH’s newly formed, six-member working group that will review proposals for access to the HeLa full genome sequence data. In addition, NIH-funded researchers who generate full genome sequence data from HeLa cells will be expected to deposit their data into a single database for future sharing through this process. The database study page will be accessible after the embargo lifts at this url: http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/study.cgi?study_id=phs000640.v1.p1. Other investigators will be encouraged to respect the wishes of the family and do the same. Importantly, all researchers who use or generate full genomic data from HeLa cells will now be asked to include in their publications an acknowledgement and expression of gratitude to the Lacks family for their contributions.
Whole Genome Sequencing: Privacy, Consent and Further Reform
It is increasingly apparent that engaging the public as a partner is critical to scientific advancement. The Obama Administration is exploring fundamental reforms to human subjects protections—actions that are being driven in part by the fact that technological advances, especially in genomics and computing, have made the notion of “de-identifying” a research participant’s biological sample virtually impossible. Current policy permits the research use of specimens and generation of whole genome sequence data without the knowledge or permission of the people providing the sample, so long as, for example, the researcher cannot identify that person.
The History of HeLa Cells
Henrietta Lacks, an African-American woman who was 31 at the time of her death, was being treated for cervical cancer at Baltimore’s Johns Hopkins Hospital in 1951. Cells were extracted from the biopsy of her tumor sample for use in research without her knowledge or consent. At the time, there were no federal regulations or restrictions on the use of patients’ cells in research. Although Lacks died shortly afterwards from her aggressive disease, scientists were able to keep her cancer cells alive and replicating under laboratory conditions.
The circumstances surrounding the HeLa cell line are unique because the identities of the source of the cell line and her descendants are public and widely known. Because hers were the first human cells cultured continuously for use in research, Lacks’ identity was revealed in a scientific journal in 1971 in reference to the landmark accomplishment. Subsequently, her story was told in a BBC documentary in 1997, and in the 2010 bestselling book, “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. As a result, the Lacks family has been propelled into the spotlight to an extraordinary degree.
The Office of the Director, the central office at NIH, is responsible for setting policy for NIH, which includes 27 Institutes and Centers. This involves planning, managing, and coordinating the programs and activities of all NIH components. The Office of the Director also includes program offices which are responsible for stimulating specific areas of research throughout NIH. Additional information is available at http://www.nih.gov/icd/od.
About the National Institutes of Health (NIH): NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.
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