Skloot R. The Immortal Life of Henrietta Lacks. New York: Crown Publishing Group, Random House; 2010.
This book tells the true story behind the growth of the first human cell line-the HeLa cell (pronounced hee-lah). Students of medicine, biology, and bioethical research have worked with HeLa cells. Many have learned about scientific breakthroughs possible because of the work done with these cells. Yet, only recently, the cells were given an identity and a history. In this New York Times bestseller, Rebecca Skloot gives voice to the family and patient behind the cell line.
Her name was Henrietta Lacks, although early scientists only knew her as HeLa. In 1951, Henrietta was a 31-year-old poor, black mother of 5 with cervical cancer. Henrietta lived in Baltimore and received care at Johns Hopkins Hospital. Without her implicit knowledge, doctors took tissue samples from her cervix for diagnosis and continued to use them for research, an ongoing attempt to reproduce human cells outside the body.
Surprisingly, from this sample, the first viable human cell line survived, reproduced, and became 1 of the most important tools in research. HeLa cells were used to help develop the polio vaccine, treatments for leukemia, Parkinson disease, and influenza. For decades, and still today, the cells are used in gene mapping, drug testing, AIDS research, and personalized medicine. The cells are standard laboratory workhorses.
Skloot tells the story artfully, using medical and legal records, personal journals, and interviews, as well as quotes and original dialogue. She captures the scientific intrigue and personal impact as the Lacks family learns that their mother's cells are alive and widely used in medicine. This revelation is a shock to the Lacks family. The concept, the science, and the emotions are difficult to navigate and understand. Skloot explains both the scientific and the lay interpretation judiciously in her efforts to represent both views. Skloot gives us insights into the science and the people on both sides of illness.
The story is personal, and thoughtful, yet creates a level of discomfort within the medical community. The Lacks family grew up poor, without health insurance, yet HeLa cells are widely produced used in medical industry, without the knowledge or consent of Henrietta or her family. There are still many uncertainties. It is not even clear how many cells currently exist from that 1 cervical specimen; however, scientists estimate that if you lay the cells end-to-end, they would wrap around the Earth at least 3 times.
It is a fascinating story of medical breakthroughs, racism, poverty, and ethics.
While researching and writing this book, Skloot helped Deborah Lacks learn about a mother she barely remembers. Skloot captures the devastating impact that Henrietta's death had on her husband and children, yet she allows people and events to speak for themselves.
This book illuminates larger issues such as access to care, and protection of human subjects. However, the reader must remember that Henrietta died in a different time, before formal informed consent existed to protect society's most vulnerable people.
This book is a wonderful educational tool to stimulate discussion about protection of human subjects, informed consent, and the protection of vulnerable populations. I use it as a discussion tool when teaching about ethical conduct of research and the value of biomedical research.
Additional resources are available on YouTube, blogs, and journal articles.
SOCIAL MEDIA
Henrietta Lacks: Her DNA Fueled Medical Breakthroughs
Published on August 8, 2013.
More than 60 years ago, Johns Hopkins researchers took cells from a cancer patient-cells that fueled medical breakthroughs but were used without her consent. Now, her family has reached an agreement with the National Institutes of Health. Terrell Brown's report includes an interview with Dr Francis Collins, director of the National Institutes of Health, who reminds us that HeLa cells have saved thousands of lives.
https://www.youtube.com/watch?v=y38pgPY6Zq0
Interview With Rebecca Skloot: The Story of HeLa
Uploaded on May 6, 2010
Rebecca Skloot, author of The Immortal Life of Henrietta Lacks and the story of HeLa, the first human cells replicated in a laboratory.
https://www.youtube.com/watch?v=tnUp0xQlfK8
ARTICLES
Asplund, J. Throwback Thursday: The Horror of the "Tuskegee Study of Untreated Syphilis in the Negro Male". Hospital and Health Networks. November 19, 2015.
http://www.hhnmag.com/articles/6737-throwback-thursday-the-horror-of-the-tuskege
Accessed January 25, 2016
Jon Asplund revisits a painful time in medical history as he recounts an indefensible research project: The Tuskegee Syphilis Study. The study now serves as a model for unethical research as it highlights an injustice that must never be repeated.
In 1932, the US Public Health Service and the Alabama State Health Department began what became known as the "Tuskegee Study of Untreated Syphilis in the Negro Male."
At the start of the study, treatments for syphilis were largely ineffective. Although there were some treatments, study participants received only placebos. The investigators were focused on what happened to men with untreated syphilis. However, as the study progressed, penicillin was identified as an effective treatment for syphilis, yet it was not offered to the men in the Tuskegee study.
Asplund reminds us that this unconscionable medical study lasted 40 years and was ended only after a public outcry challenged the federal government to end the program in 1972. The article directs the reader to Tuskegee University's National Center for Bioethics in Research and Health Care to learn more about how to educate new researchers and learn from this dark period in medical research.
REFERENCE BOOKS
American Psychological Association. Concise Rules of APA Style. 6th ed. Washington, DC: American Psychological Association; 2010.
The Concise Rules of APA Style, Sixth Edition, is a lightweight, spiral bound paperback. It is easy to carry and fits into a backpack or book bag. Students and authors may use this as a quick reference for citations and formatting; however, the text is also a comprehensive guide for the novice and experienced writer.
The initial chapters guide the writer through organization, planning, and insights into concise writing, such as choosing words and phrases effectively. Sections are dedicated to important, yet often overlooked, elements of basic writing, such as punctuation, spelling, and when to capitalize!
The text provides descriptions and wonderful examples for presenting numbers, showing statistical results, creating effective tables, and using many types of graphic elements.
The text simplifies rules for citations and guides the reader with examples covering many categories such as journals, textbooks, digital content, and podcast.
I was impressed with the attention to 1 often-overlooked task-preparing a reference list that is easily retrievable. The text addresses this in detail, providing guidance on how to construct a final error-free reference page.
The Concise Rules provides practical guidance for reducing bias in language, including describing the appropriate level of specificity and using correct labels for gender and ethnic identifiers. This is a thoughtful addition because scientific writing must be free of implied bias and assumptions, yet this is often a difficult task for writers.
I especially like the examples and explanations about presenting data in specific types of tables. Many authors publish the results of complex experimental designs and provide lengthily textual descriptions yet miss opportunities for a concise summary in a compact table with clear labels and statistical clarity. This text contains models for simple regression tables to detailed specifications of complex experimental designs.
Explanations for the most effective use of photographs and a checklist for adding figures even ask the author to check with the publisher for acceptable file formats.
Sections of the book address common challenges, such as wordiness, grammatical errors, and spelling. However, expanded content discusses electronic sources and new guidelines for adding supplemental content.
A final appendix includes a checklist for manuscript submission, bringing the author through essential rechecks for elements such as mathematical calculations and statistical symbols, to copyright and submission formats.
The full-text publication manual remains the best source for information about scientific publishing. The Concise Rules offers a portable companion and may be used in conjunction with the full text and the Web site. It is a helpful supplement to the American Psychological Association style Web site and encourages writers to consult the Web site for more style and writing tools.
BLOG
Crotty D. Open Data and Trust in the Literature. The Scholarly Kitchen. Jan 15, 2016. Accessed January 28, 2016
http://scholarlykitchen.sspnet.org/2016/01/15/open-data-and-trust-in-the-literat
Clotty reports on the work of David Spiegelhalter, who calls for accurate statistical analysis of data and access to research data, to know whether one can trust a research result. He talks about the trail of data and the need to understand the true course of data. Often, researchers may cherry pick results to publish only significant results. However, null finding may help us learn more about statistics and reproducibility of results. Spiegelhalter appeals for open data as he shares an interview with Nicole Janz, a researcher at the University of Cambridge. Dr Janz talks about reproducibility and suggests that we need to improve our educational efforts for students in both data transparency and replication (https://www.youtube.com/watch?time_continue=12&v=KXUUtmNBwCMion.)
Janz recommends a course that would require students to replicate published results, from available data. This type of course or expansion of traditional research course content would help novice researchers develop practical experience and an understanding of what they need to do to generate (and publish) their own trustworthy results. This enhanced model for research education would strengthen original studies and encourage replication, allowing for improvement in evidence-based recommendations for practice.
Methodologically, Dr Janz focuses on data transparency and replication through projects such as the Political Science Replication Initiative, the Center for Open Science. She also teaches statistical methods for graduate students, with a focus on a research-led approach to data analysis, and shares information in her blog.