ETHICAL DOCTORAL PROCEDURES 1

Ethical Doctoral Procedures

Maryam H. Najeeb

Harrison High School

ETHICAL DOCTORAL PROCEDURES 2

Ethical Doctoral Procedures

Henrietta Lacks is an African American woman who died of cervical cancer. Her cells were taken

for science and helped researchers develop and discover diseases and create cures using her

immortal cells that lived decades after she died. They were the first immortal human cell line.

Henrietta's cells saved years of time and effort and saved thousands of lives. Despite the benefit

found from her cells, the way her cells were taken from her was a violation of privacy and

human rights. George Gey, the doctor who grew the first immortal cell line (HeLa), retrieved the

cells by taking some of Henrietta's tissues and culturing it without Henrietta or her family's

knowledge. He did this while Henrietta was going through insidious pain from her tumors. The

question rises; does the "good" of humanity and science outweigh the right of the individual?

Rebecca Skloot, the author of "The Immortal Life of Henrietta Lacks," explored the journey

Henrietta and her family took during and after the discovery of Henrietta's immortal cells.

During this journey, Henrietta and her family experienced many events that changed their life

while also changing the world. Rebecca Skloot also wrote a text briefly explaining Henrietta's

life and her contributions to science called "Henrietta's Dance". In this text, she explains the life

of Henrietta Lacks in a brief and condensed way. Henrietta's life and family was also explored in

a video from ABC news explaining the struggles and life of Henrietta Lacks and her family. The

"good" of humanity and science doesn't outweigh the right of the individual because it is not

equitable for the individual to be unaware of things happening to their own bodies. For instance,

Henrietta had cells taken from her without her or her family's permission. That was a violation of

privacy and human rights. It's imperative for a patient who gets tissues/cells extracted from their

body to be informed that scientists could effortlessly make a profit from that and the family or

individual would not know just as the Lacks family. Scientists made millions of dollars from
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HeLa cells and the Lacks family didn't receive a portion of it and did not know about it until

decades following Henrietta's death.

Doctors and scientists should get permission/consent from a patient before they do

anything that involves the extraction of tissues/cells. Doctors such as George Gey should have

gotten permission or approval from at least the Lacks family before he extracted Henrietta's

tissues. Scientists around the world knew about HeLa; The Lacks family, decades later. The same

should go for any individual who needs (or does not need) an extraction of tissues from their

body. It is not appropriate to take tissues from one's body and use them and benefit from them

while the patient and/or the patient's family don't know. For example, George Gey took tissues

from Henrietta without her knowing. He later cultured them, researched them, and sold them. He

created a complete and successful immortal cell line. The least Gey should have done was to

inform Henrietta or her family. It is true that before, laws like having consent from the patients

before extracting tissues from them was not required, but today, doctors should take the extra

step and inform a patient of any extraction needed to be done. According to Judith Greenberg in

the book of "The Immortal Life of Henrietta Lacks" by Skloot (2010) she states, "it's very

important for donors to understand what the consequences of tissue research might be," (pg.318).

It is imperative to allow patients to decide what will happen to their body and understand what

scientists/doctors will do in order to do the most ethical thing in such situations. According to

ABC news (2010), "When they were finally told in the 1970s, they were stunned, and then

angry". Despite the contribution's HeLa cells made to science, such as scientists being able to

understand cells and diseases in a more advanced way, and discovering cures for common

diseases, it was unethical to take cells from an individual solely for scientific research. Her

family never knew about her cells; however, a few decades later they were informed of them. It
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impacted her family in a very negative way, knowing that they were untold about things that

changed the world through her mother's cells. Although in the 1950s it was not a standard thing

to tell patients when they are getting tissues extracted, Johns Hopkins Hospital should have

informed the Lacks family as soon as they grew the HeLa cells. Scientists should be more aware

of the person and the individual/patient in which the cells will be extracted from in order to

inform them of what will happen to their body.

Profits made in which an individual's body parts/cells were used for scientists, should be

partially given to the individual. The right to obtain some of the money made from commercial

uses should be present when profits are made from a patient's cells. When a patient gets body

parts/tissues/cells extracted from their body for medical reasons or a donation, and the scientist

or the doctor manages to get a profit out of these body parts, the individual or the individual's

family in which scientist benefitted out of his/her cells should be able to benefit off the profits

made from them because the profits wouldn't have been made if it wasn't for the individual to

give the cells to science. As of Henrietta's case, the medical industry made millions and millions

of dollars off her cells, and her family did not know about any of it until a few decades following

her death. The scientists perpetuated the situation rather than informing the Lacks family, which

caused anger from them when they finally found out years later. Henrietta's family lived in

poverty and wasn't even able to have proper health insurance to cover for all the health problems

they had. According to Skloot (2010), "Lawrence yelled, 'but they made millions! It's not fair!

She's the most important person in the world and her family is living in poverty. If our mother so

important to science, why can't we get health insurance?'" (pg.168) Scientists were making

millions of dollars while Henrietta's family were living in poverty and could not even afford to

pay for health insurance. Health insurance would've been the least doctors can do to thank
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Henrietta and her family for their contributions to science. According to Skloot (2010), "Day had

prostate cancer and asbestos-filled lungs. Sonny had a bad heart, Deborah had arthritis,

osteoporosis, nerve deafness, anxiety, and depression. With all that plus the whole family's high

blood pressure and diabetes," (pg. 168-169). The Lacks family was struggling with their current

health status and that was partially because they couldn't afford health insurance. Scientists

should not give all the profits made from the individual's cells to the patient or their family, but

they should give a portion of it. Doctors should give even more to families and people who are

struggling and in poverty such as the Lacks family.

Others may argue that scientists should be allowed to extract cells from patients without

them knowing and that the profits made from the cells should not go to the patient in which the

cells came from. Their evidence is that if scientists extracted cells from patients without them

knowing, scientists could discover cures for common diseases and develop more vaccines faster

than if they had to get consent from a patient to extract cells. Also, if someone were to take

something that belongs to you, even if you allowed that, there will always be curiosity about

what will happen to that thing because it once belonged to the patient or the owner. Therefore,

the patient might refuse to allow their cells to be used for research, allowing less discoveries, and

vaccines would be discovered slower. According to Skloot (2010), "like it or not, we live in a

market-driven society, and science is part of that market" (pg.325). They think that people must

know that science is a part of life, and it should not be made an option for patients to determine

whether they should have their tissues taken for science or not. Their evidence to patients not

receiving any of the profits made from their cells is that if patients are given the access to obtain

profits made off their cells, it would hinder scientific research because the profit could be utilized

better from commercializing cells and could ultimately be used for further research on an area of
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medical study rather than giving it to the patient. According to Skloot (2010), "without

commercialization, companies wouldn't make the drugs and diagnostic tests so many of us

depend on" (pg.322). They would argue that patients should not receive any money from the

profits made even if they were in poverty, such as the Lacks family because that would reduce

the potential of research and study that could be done on the particular cells. Their argument

based on scientists being able to extract tissues from patients without them knowing is invalid

because a patient needs to become aware of all the things happening to their body. They might

refuse, but that is personal freedom and no one should control that. Also, patients being unaware

of things such as a doctor taking tissues without their permission could trouble the doctor more

than the patient because later when the patient finds out, some will have the will to sue them,

making doctors experience a loss in money and science. The argument based on individuals not

profiting from their body parts is also invalid because individuals who give their cells to science

should also have a share from the profit made because the profit would not have been made if it

wasn't for the patient to give the cells to science. A larger share of profits should go to families

experiencing financial issues and cannot afford essential things such as the Lacks family who

couldn't afford health insurance to cover for all their medical conditions.

In conclusion, patients should not be unaware of what doctors are doing to them. This is

especially true if it involves the extraction of tissues as George Gey extracted tissues from

Henrietta without her permission. Nowadays, people need to be fully aware and knowledgeable

about what doctors are going to do to their bodies such as tissue extraction. Doctors should also

keep in mind that if profits are made from an individual's cells, the individual should have a

share of the profits made because without the donation of their cells to science, the profits would

not have been made. Additional amounts of money should be added and given especially towards
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an individual or an individual's family suffering from poverty such as Henrietta's family. It is

imperative to allow patients to be knowledgeable about what occurs to their body and allow them

to receive a portion of the profits made from their cells. Allowing the patient to be informed of

any extraction that occurs to their body will carry the risk that patients might not allow for the

cells to be extracted. Patients should have the right to refuse because its personal freedom.

Patients should also have the right to receive a portion of the profits made because they would

not be made without the patient's cells. People and doctors should take action by giving the

patients the right to control and know what happens to their bodies as well as having a portion of

the profits made. People should also support human rights to privacy and knowledge and

encourage the doctors to keep patients up to date about anything that occurs to them. That way,

there will not be any worries or inconvenience for both the doctors and the patients. Patients

undergoing surgery should sign a paper of consent that assure the doctor whether the patient is

fine with what will happen to any extractions from the body or not. Doctors and scientists should

also make sure that patients receive a portion of any profits made from the cells and the patient

should always stay up to date with their cells and the process undergoing them in order to

continue the use of cells and benefit from them in science in a more ethical way.
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REFRENCES

Skloot, R. (2010, 2011). The Immortal Life of Henrietta Lacks. New York: Crown Publishing

Group.

Skloot, R. (2000). Henrietta's Dance. Retrieved October 20, 2020, from

https://pages.jh.edu/~jhumag/0400web/01.html

Immortal Life of Henrietta Lacks: Henrietta Lacks. (n.d.). Retrieved October 20, 2020, from

https://libguides.heidelberg.edu/henrietta_lacks/henriettalacks