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The HeLa case

Benefiting from ones own cells
by

Shannon O'Neill

on 6 January 2014

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Transcript of The HeLa case

And...
That's exactly what they did.
The exam
In 1951, aged 31.,Henrietta attended the john Hopkins hospital to get 'a knot' checked out in her womb.
Henrietta was diagnosed with cervical cancer
Radiation therapy was the treatment Dr. Howard Jones opted for.
During this time Dr. Howard took a swab of Henrietta's cervical cells and sent them to his friend, researcher George Gey, without her knowledge of this.
Article 9 (Privacy and confidentiality):
This point could be argued under the following 2 principles:

Article 4 ( Benefit and harm) :
It made no difference to Henrietta in taking her cells - she wasn't in danger. The benefit from the research completely outweighed the risk.


Ethical Issues
A number of issues existed from this case:
Position 1:
Henrietta and her family
It was wrong for the doctors to take her cells without her knowledge.
Henrietta Lacks was an African american woman born in 1920. She grew up as a poor black tobacco farmer in Clover, Virginia.Married to David Lacks,they had 5 children.
The birth of HeLa
Dr Gey was a researcher in cell culture.
Up until that point there was little to no success in growing human cells in a lab.
Henrietta's cells were different.
Her cells divided at a rapid pace and continued to grow outside of the human body.
Gey named the cells HeLa after Henrietta Lacks.
The HeLa case
Benefitting from ones own cells
- During Lack's treatment more swabs of tissue were taken from her cervix without consent or knowledge of the family

- Cells began to multiple at alarming rates, tumors grew and killed Henrietta in October of that year. Just 9 months after discovery of the cancer

- Gey began to share the HeLa cells with other researchers and scientists in hope of advancing medicine and finding a cure of cancer.

HeLa cells went on to help in developing a vaccine to prevent Polio disease.They helped in advances with chemotherapy, AIDS, cloning,gene-mapping and IVF. They even went to space to see what would happen cells in zero gravity!.

It's estimated that if you lay all HeLa cells ever grown end-to-end, they'd wrap around the earth at least 3 times, spanning more than 350 million feet!!

HeLa cells became one of the most important tools in medicine.They were bought,sold,packaged and shipped in their trillions to labs around the world!

It became a multimillion-dollar industry. People made a lot of money off HeLa cells and yet her family were kept in the dark for 20 years!They never received a dime.
Race
Science
The right thing to do
Family still living in poverty
No acknowledgement
Radiation therapy (became infertile)

The main ethical issue I want to focus on:
Henrietta or her family's consent were not given for the use of her cells.
Henrietta and her family were violated under 2 principles of UNESCO's declaration of bioethics.

1.Article 6 ( Consent) :
Henrietta was never asked permission for use of her cells. She was completely unaware what they were being used for. She might have felt strongly against it due to religion, culture, background etc.if she had the option for consent. This was her body and her rights were stolen from her.
This has 2 aspects
-
1. The families medical records were leaked to the public without consent.This caused major issues to the family in terms of harassment from reporters. It could also for example effect them in getting health insurance i.e. higher rates due to cancer cells in the family.

2.The name of the cell line HeLa was not made particularly anonymous to the patient and particularly by someone who did not give consent.i.e numbers should have been used to protect her. A name was further leaked to the public - Helen Lane.
Position 2: the doctors and researchers
It was the right thing to do to take the cells
Article 14 ( social responsibility and health:

This was the ethically correct thing to do for the greater good. Lacks cells significantly contributed in creating a vaccine to fight polio disease, saving thousands of people. Her cells went on to help in much needed research in many critical diseases. It could be argued that the doctor had a responsibility to take the cells in the name of medicine and science to aid in the creation of cures for diseases in bettering the population’s health.
My Position
Put into context - no guidelines in the 50's
Advanced medicine
Saved so many lives
Did no harm to the patient
No immediate money made off the researchers
No law was broken.

However not saying it was
the right thing to do
undecided?
On the other hand there seems to be massive inequality for Henrietta and her family
- still live in poverty
-can't afford healthcare
- no royalties
- Kept in the dark
- no information
- harassment from the media
- Cells stolen from their
mother.
Conclusion
This may have not even been a case if consent was gotten in the first place. Henrietta family came out to say that she would have been happy to sign for consent if it meant helping others. It was the manner in which details came out that caused anger.

Ethical guidelines are very different today than the 1950's. This would have to go through various review boards and ethical committees before it could go ahead.

It is difficult to address in practice today because there is still debate over tissue ownership for research purposes. Once it leaves your body it is no longer yours.
References
Skloot, R. 2010. The Immortal Life of Henrietta Lacks. New York: Crown.
United Nations Educational, Scientific and Cultural Organisation 2005. Universal Declaration on Bioethics and Human Rights [Online]. Available from: http://unesdoc.unesco.org/images/0014/001461/146180E.pdf [Accessed 18 November 2013].
Full transcript