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Ownership of the body

rachelr's picture

 Some of the continuation of our discussion on Tuesday of The Immortal Life of Henrietta Lacks brought me back to an exercise that we did in my bio 110 course when reading the book. Our assignment was to create an informed consent for for Henrietta, attempting to explain the basic concepts behind her cancer and cells, and leave room for the potential of further research on them should her cells in fact grow in culture. So I just thought that I would share what I came up with as an informed consent for that perhaps could have been given to Henrietta Lacks:

 

Please carefully read and consider all material and information included in order to make an informed decision. There are no guarantees as to the success or profit that any person or persons may gain from this research and participant participation.

 

            You are invited to be a part of research at Johns Hopkins Hospital and in the greater medical community. We are collecting cell samples from patients at Johns Hopkins Hospital in an attempt to grow cells in culture. Success, should our efforts succeed, could lead to disease cures and medicines that will help your children and future generations. We would like to scrape a sample of cells from the tumor growing in your cervix to aid in our medical battle against illness.

            A cell is the most basic structure of the human body. They are like the strings in fabric- pieces that make up a whole. Cells are mobile, they move around inside your body, keeping you a dynamic form of life. These cells, which are incredibly small (microscopic), cannot be seen by the naked eye. Only with a large magnification can we see them. Inside each cell is an ID; this ID is just like one that you would carry around today, or information that you would put down on paperwork. This ID inside the cells is your DNA, and it is unique to each and every person. That’s what makes everyone in the world different. When you get sick with an illness or disease (in this case cancer), the virus (which is similar to a cell that is not naturally in your body) wants to attach to your cells and change them to be more like the virus. This creates a mutation in the DNA in these cells that the virus comes into contact with (like a fake ID). This makes the cells act differently, more like the virus, and they begin to take important nutrients and energy from the healthy cells so that they can keep growing. When this happens, defense systems like the immune system and central organs don’t get the energy that they need to keep working correctly, and eventually they shut down, causing death. Cervical cancer, usually caused by a virus called HPV, is when a tumor (a collection of sick cells) forms on a woman’s cervix. The cervix is located just inside the vagina and is part of the reproductive system. If not treated, the tumor will continue to grow and organs and tissues will begin to die, making it impossible for the body to continue to live.

            Should you agree to participate, Dr. George Guy and his medical team of trained doctors and nurses within the segregated ward will perform a routine examination. Should the tumor be visible and easily accessible, we will collect a small sample of cells; a portion of these cells will be frozen, keeping them alive, while we attempt to grow a few smaller samples. Should they begin to grow, we will be able to introduce viruses, infections, and other outside stimuli and observe how these cells react. Based on these observations and experiments on the living cells we will be able to further understand how to defeat the illnesses and develop vaccines and cures for future generations.

            The procedure should extend your regular examination time by no more than fifteen minutes. This is anticipated to be a one-time procedure. You will be contacted should we need additional samples. Participants may feel slight discomfort around the site of harvest, and slight bleeding may occur. Should the cells of the participant grow and reproduce in culture, it is possible that these cells will be used by hospitals and researchers across the country for research and analysis. We cannot guarantee, however that you will receive any benefits from this study.

            Any information that is gained and in any way related to this study and that can be linked back to you will remain confidential and will be disclosed only with your permission or as required by law. Your full name will be known only by Dr. George Guy; from thereon out your cells will be coded, and all information gained during any research with the cells will only be linked to that cell name, not your own.

            Due to the fact that we have no way of gauging any potential success of research with, or even the successful growing of your cells, we cannot promise any compensation at this time. There are no chances of any costs to the subject due to participation, and there are no risks to the wellbeing or health of participants.

Your decision whether or not to participate will not influence current or future relations between the participant and Johns Hopkins Hospital.

If you have any questions, please ask us after you have finished reading this form. If you have any additional questions later, Dr. George Guy or a trained individual on this medical team will be happy to answer them.

 

You will be given a copy of this form to keep.

 

YOU ARE MAKING A DECISION ABOUT WHETHER OR NOT TO PARTICIPATE IN THIS RESEARCH. YOUR SIGNATURE INDICATES THAT YOU HAVE DECIDED TO PARTICIPATE, HAVING READ THE INFORMATION PROVIDED ABOVE.

 

 

______________________________  Date

 

_____________________________ Signature of Witness (if any)

 

_________________________________________________________ Signature

 

_________________________________________________________ Relationship to Subject (This line should not appear on forms that will be given to subjects consenting for themselves)

_________________________________________________________ Signature of Investigator

 

Comments

rachelr's picture

Another example...

 To add to the list of times when science has failed to inform individuals of their involvement in scientific advances, I am currently reading The Seven Daughters of Eve for my bio lab this quarter. It is a nonfiction book about the author's exploration of race and the tracing of mitochondrial DNA back to seven women who lived approximately 150,000 years ago. The author, Sykes, writes that on a visit to Polynesia he explained to a hospital that he is a geneticist and convinced them to give him 35 blood samples left over from blood-sugar tests. He then used these samples to examine mitochondrial DNA in order to see if he could determine the geographical origin of the Polynesians. So here, 35 people went to a hospital, gave blood samples for SUGAR tests, and then ended up leaving the country and the results of these blood samples are now published and explained in a national bestselling book. And those 35 people will probably never know about that, and they never gave consent for that to happen. Just something to think about...

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