Let's Not forget. Black Genetic Excellence: The Legacy of Henrietta Lacks

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In 1951, a young mother of five named Henrietta Lacks visited The Johns Hopkins Hospital complaining of vaginal bleeding. Upon examination, renowned gynecologist Dr. Howard Jones discovered a large, malignant tumor on her cervix. At the time, The Johns Hopkins Hospital was one of only a few hospitals to treat poor African-Americans.

As medical records show, Mrs. Lacks began undergoing radium treatments for her cervical cancer. This was the best medical treatment available at the time for this terrible disease. A sample of her cancer cells retrieved during a biopsy were sent to Dr. George Gey's nearby tissue lab. For years, Dr. Gey, a prominent cancer and virus researcher, had been collecting cells from all patients who came to The Johns Hopkins Hospital with cervical cancer, but each sample quickly died in Dr. Gey’s lab. What he would soon discover was that Mrs. Lacks’ cells were unlike any of the others he had ever seen: where other cells would die, Mrs. Lacks' cells doubled every 20 to 24 hours.

Today, these incredible cells— nicknamed "HeLa" cells, from the first two letters of her first and last names — are used to study the effects of toxins, drugs, hormones and viruses on the growth of cancer cells without experimenting on humans. They have been used to test the effects of radiation and poisons, to study the human genome, to learn more about how viruses work, and played a crucial role in the development of the polio vaccine.

Although Mrs. Lacks ultimately passed away on October 4, 1951, at the age of 31, her cells continue to impact the world.



The Importance of HeLa Cells

Among the important scientific discoveries of the last century was the first immortal human cell line known as “HeLa” — a remarkably durable and prolific line of cells obtained during the treatment of Henrietta’s cancer by Johns Hopkins researcher Dr. George Gey in 1951.

Although these were the first cells that could be easily shared and multiplied in a lab setting, Johns Hopkins has never sold or profited from the discovery or distribution of HeLa cells and does not own the rights to the HeLa cell line. Rather, Johns Hopkins offered HeLa cells freely and widely for scientific research.
Over the past several decades, this cell line has contributed to many medical breakthroughs, from research on the effects of zero gravity in outer space and the development of the polio vaccine, to the study of leukemia, the AIDS virus and cancer worldwide.

Although many other cell lines are in use today, HeLa cells have supported advances in most fields of medical research in the years since HeLa cells were isolated.

 

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Role of The Johns Hopkins Hospital

At the time that Henrietta was a patient, Johns Hopkins was one of the few leading hospitals that served African-Americans — as was stipulated by Mr. Johns Hopkins, founder of the university and hospital, in his will.

But Johns Hopkins was a segregated hospital at that time, and that racial discrimination was often unacceptably a part of day-to-day interaction.
Today, Johns Hopkins focuses intensely on providing the best care to every patient and upholding the highest standards of medical ethics. We have a special commitment to Baltimore City, with a long history of working to improve the health and well-being of our community.

Today, we are more committed than ever — investing heavily in comprehensive community development and ongoing health initiatives.

 

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Upholding the Highest Bioethical Standards
The story portrayed in The Immortal Life of Henrietta Lacks points to several important bioethical issues, including informed consent, medical records privacy, and communication with tissue donors and research participants.

Johns Hopkins, and researchers and bioethicists worldwide, have learned a great deal from examination of these issues. We are deeply committed to ensuring the appropriate protection and care of medical information related to Henrietta Lacks and her family. In 2013, Johns Hopkins worked with members of the family and the National Institutes of Health (NIH) to help broker an agreement that requires scientists to receive permission to use Henrietta Lacks’ genetic blueprint, or to use HeLa cells in NIH funded research.

The committee tasked with deciding who can use HeLa cells now includes two members of the Lacks family. The medical research community has also made significant strides in improving research practices, in part thanks to the lessons learned from Henrietta Lacks’ story.

The table below demonstrates the significant shift in biomedical practices between the time when Henrietta Lacks was treated and today.

	1950s	Current Practices
Informed Consent	There was no established practice for informing or obtaining consent from cell or tissue donors.	Johns Hopkins and other medical research centers maintain strict patient consent processes for those who donate tissue and cellular materials for research.
Collecting Patient Samples for Research	It was common practice at Johns Hopkins to collect tissue samples from cervical cancer patients, regardless of race or socio-economic status.	Today, any request for samples for research purposes would fall under regulatory and legal standards, and the oversight of an Institutional Review Board (IRB).
Using Patient Cells for Research	There were no local or national regulations on the use of cells in research.	It is standard practice to have an IRB examine every research study involving human participants before it is approved. IRBs uphold strict standards of informed consent for all potential participants in human research involving cell or tissue donation.
Medical Records Privacy	Patients had no right to see or retain a copy of their medical records. No state or federal laws prohibited the sharing of medical record information in connection with research.	Today patients have a right to see and have a copy of these medical records. Both state and federal laws regulate patient consent and the use and sharing of medical record information.
Segregation	Very few leading hospitals treated African American patients. Johns Hopkins Hospital was an exception, providing the same quality of care to both black and white patients. However, black patients were treated in segregated wards at the time of Henrietta Lacks and for many years thereafter.	Johns Hopkins began desegregating in the 1950s with full integration of ward services in Surgery in 1959. By 1973, all inpatient services were desegregated.

 

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The Immortal Life of Henrietta Lacks

In 2010, Rebecca Skloot published The Immortal Life of Henrietta Lacks, a compelling look at Henrietta Lacks’ story, her impact on medical science, and important bioethical issues. That book became the basis for the HBO/Harpo film by the same name, which was released in April 2017.

Henrietta Lacks was a woman who unknowingly donated her cells here at Hopkins in 1951, beginning what was the first, and, for many years, the only human cell line able to reproduce indefinitely.

Her cells, known as HeLa cells for Henrietta Lacks, remain a remarkably durable and prolific line of cells used in research around the world. This guide addresses several important health care, research and ethical themes addressed in the book and in the movie.

Johns Hopkins applauds and regularly participates in efforts to raise awareness of the life and story of Henrietta Lacks. We were proud to support the book research and development of the film by providing full access to the Hopkins archives and granting permission to HBO to film several scenes for the movie on the Hopkins campus.

The publication of Skloot’s book led Johns Hopkins to review our interactions with Henrietta Lacks and with the Lacks family over more than 50 years. At several points across those decades, we found that Johns Hopkins could have — and should have — done more to inform and work with members of Henrietta Lacks’ family out of respect for them, their privacy and their personal interests.

We are deeply committed to the ongoing efforts at our institutions and elsewhere to honor the contributions of Henrietta Lacks and to ensure the appropriate protection and care of the Lacks family’s medical information.

 

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Honoring Henrietta Lacks

Our work with members of the Lacks family since 2010 has resulted in the development of a series of programs to recognize and honor Henrietta Lacks and her extraordinary contribution to clinical research and the advancement of health throughout the world.

These include scholarships, engagement with local schools, and annual symposia. In 2016, Johns Hopkins began discussions about naming a new building on the medical campus and a graduate-level scholarship at the school of medicine for Henrietta Lacks.

Henrietta Lacks Symposiums
The Johns Hopkins Institute for Clinical and Translational Research (ICTR) hosts two annual Henrietta Lacks Symposiums.
One brings together researchers and the community to discuss ethics in medical research and how they can effectively work together. Last year’s forum was attended by more than 1,000 people.

The second event is an annual Henrietta Lacks High School Symposium, bringing Baltimore City youth to Johns Hopkins to spend a day learning about biomedical research and bioethics.

The Henrietta Lacks East Baltimore Health Sciences Scholarship
Established in 2011, The Henrietta Lacks East Baltimore Health Sciences Scholarship provides a graduate of Paul Laurence Dunbar High School with a college scholarship of up to $10,000 per year for four years to pursue a career in science.

Henrietta Lacks Memorial Award
The Johns Hopkins Urban Health Institute offers the $15,000 Henrietta Lacks Memorial Award to highlight the importance of community-university collaborations, and recognize, support and promote exceptional programs developed jointly by university members and local community groups.

 

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Henrietta Lacks: the mother of modern medicine

How did cells taken from a poor black woman in 1951 come to unlock some of the biggest advances in science?

www.theguardian.com