Transcript Henrietta Lacks

THE
IMMORTAL
LIFE OF
HENRIETTA
LACKS
Rebecca Skloot
Presented by:
Kaitlyn Burke, Cydney Chomel, Hannah Crist, Brooke Delay, Lindsey Gamrat, Leslee Johnson,
Shannon King, Amanda Lengerich, Kayelene Linkenheld, and Nora Melvin
Who is Rebecca Skloot?


First learned about HeLa cells and
Henrietta Lacks in a community
college biology class
“One of the most important things
that happened to medicine in the
past one hundred years.”


Graduated with biology degree


Said by Rebecca’s biology
professor about HeLa cells
Used HeLa cells in the lab but
Henrietta was never mentioned
again
Journey to uncover Henrietta’s
story
(Skloot, 2011)
1947

Nuremberg code
 Set
up ethical standards for human experimentation as
a result of horrific experiments performed by Nazi
doctors during WWII
(Skloot, 2011)
January 29, 1951

Henrietta Lack’s first doctor’s appointment at Johns
Hopkins Hospital
(Skloot, 2011)
February 5, 1951

Henrietta was
informed that her
cervical biopsy results
indicated a malignant
tumor
(Skloot, 2011)
February 6, 1951


Henrietta returned to her doctor for first radiation
treatment
First “stolen” cells
(Skloot, 2011)
April 10, 1951

George Gey appeared on
TV discussing his work on
HeLa
 Successfully
cultured first
immortal human cell
(Skloot, 2011)
1957

“Informed Consent” appeared on court documents
(Skloot, 2011)
1973


Lacks family learns that Henrietta’s cells are still alive
Blood samples taken from Lacks family
•Failed communication between
John Hopkins’ researcher, Susan
Hsu, and family
•Family thought they were getting
tested for cancer but test was
actually to see if researchers
could culture their cells to grow
immortally
(Skloot, 2011)
1974
Federal policy for protection of
human subjects requires informed
consent
 Four days prior to policy going into effect,
Henrietta’s daughter, Deborah, had more blood
drawn

Deborah thought she was getting tested for cancer
 The physician was a geneticist, not an oncologist, and really
took her cells for genetic research

(Skloot, 2011)
1985

Portions of Henrietta’s
records were
published without her
family’s consent
(Skloot, 2011)
1988

John Moore v. California
 Court
rules in Moore’s favor saying that patients have
the power to control what becomes of their tissues
(Skloot, 2011)
1991

Supreme Court of California rules against John
Moore saying that after one’s tissues are removed
from their body, regardless of consent, the
individual no longer owns those tissues
(Skloot, 2011)
Informed Consent


An individual’s autonomous authorization of a medical
intervention or of participation in research. He or she
must authorize something through an act of informed
and voluntary consent
The elements of informed consent
Competence
 Disclosure
 Understanding
 Voluntariness
 Consent

(Beauchamp & Childress, 2001)
Henrietta’s Informed Consent for
Radiation Treatment
“I hereby give consent to the staff of The Johns
Hopkins Hospital to perform any operative procedures
and under any anesthetic either local or general that
they may deem necessary in the proper surgical care
and treatment of: _____________.”
(Skloot, 2011)
Informed Consent

Family blood draws
 -Doctors
requested to test family for HLA antigen
 -Family interpreted this as testing for cancer and were
never corrected of their misunderstanding
 -Family continued to wait for a phone call with cancer
results
(Skloot, 2011)
Paternalism

“The intentional overriding of one person’s known
preferences or actions by another person, where the
person who overrides justifies the action by the goal
of benefiting or avoiding harm to the person whose
preferences or actions are overridden”
(Beauchamp & Childress, 2001)
Vulnerable Populations
 Economically
disadvantaged
 Racial and ethical minorities
 Uninsured
 Low income children
 Elderly
 Homeless
 HIV
 Chronic health conditions including mental illness
(AJMC, 2006)
Paternalism/Vulnerable Populations

Prisoners are a vulnerable population
Cancer cell injection
 Giving back to society
 Unable to give informed consent


Johns Hopkins segregated hospital
Different treatment/care
 Physicians took advantage of patients for
research in exchange for free care

(Skloot, 2011)
African American Superstitions
Superstitions about healthcare date back to at least
the1800’s



Barrier for black patients to seek care
“Night Doctors”
Medical Schools offering money for black bodies that can
be worked on
(Skloot, 2011)
Libertarianism vs. Utilitarianism

Libertarianism
 Henrietta’s
individual freedom and rights are more
important than the greater good that came from her
cells

Utilitarianism
 Henrietta’s
cells were taken without her knowledge,
violating her rights, but produced advances in medicine
such as the polio vaccine, cloning, gene mapping, in
vitro fertilization.
(Brainard, 2013; Skloot, 2013)
References
Beauchamp, T., & Childress, J. (2001). Principles of biomedical ethichs. (5 ed.,
pp. 78-79). New York, New York: Oxford University Press.
Brainard, C. (2013). HeLa-cious coverage: Media overlook ethical angles of
Henrietta Lacks story. Columbia Journalism Review. Retrieved from
http://www.cjr.org/the_observatory/henrietta_lacks_hela_genome_pr.php?
page=all
Skloot, R. (2011). The Immortal Life of Henrietta Lacks. New York: Broadway
Books.
Skloot, R. (2013). The immortal life of Henrietta Lacks, the sequel. The New York
Times. Retrieved from
http://www.nytimes.com/2013/03/24/opinion/sunday/the-immortal-lifeof-henrietta-lacks-the-sequel.tml?pagewanted=all&_r=0
Vulnerable Populations: Who Are They? (2006, November 1). AJMC. Retrieved
November 17, 2013, from
http://www.ajmc.com/publications/supplement/2006/2006-11-vol12n13suppl/nov06-2390ps348-s352/1