Week 9 Post 1-Ownership of Human Tissue and Genetic Information

 Moore v. The Regents of the University of California Case

-John Moore underwent treatment at the UC medical center for leukemia, and the doctor drew large amounts of blood, bone marrow, and other bodily substances to make the diagnosis

    -The doctor and some other members of the center knew Moore's blood products were very valuable and could be commercialized, and the doctor even had Moore have his spleen removed and taken too research unit without telling him

    -For the next seven years Moore had various body cells removed under the supervision of Gold, the doctor, who told him it was necessary for his treatment   

    -The doctors used Moore's T lymphocytes to establish a cell line which the university patented and it was used for commercial development with the Genetics' Institute and made Gold a lot of money

-Moore eventually sued Gold and the case progressed to the California Supreme Court, and the claims he made against the doctor were breech of fiduciary duty, lack of informed consent, and conversion which is a kind of theft or robbery

    -The lack of informed consent claim was put forth because there is a duty to disclose information to the patient's consent and a prohibition on performing medical procedures without obtaining informed consent

     -The breech of fiduciary duty claim was put forth because there is a duty of doctors to release all the information to the patient 

-The court said that the claim made was a legitimate one to make, and then the facts of the case needed to be determined so see if the claims were true

-The notion of materiality is the concerns of a reasonable patient, so what materially is the expectation of information sharing a doctor has for a reasonable patient, and the court says that the doctor has a responsibility to disclose any personal interest unrelated to the patient's health that might change the doctor's judgment

    -The standard of materiality has different tracks it could go down, where one responsibility is giving all the information a patient could possibly want, which would be very hard to do, and creating an idea of what a reasonable patient would want, which would require many normative conclusions to be drawn

    -The doctor had an opposing argument that if doctor's revealed financial interests then patients might be distracted, and not act in their own best interest, but the court says its the patient's prerogative not the doctor's

-The court went for the option that instead of prohibiting the would be relation between the doctor and Moore, the said the problem was with the lack of disclosure not that the doctor had a financial interest 

    -The court could've chosen the route of a firewall, that any doctor that has a financial interest in a patient or procedure they cannot treat them, but that might have pushed doctors doing research out of the field of treating patients

-The last claim put forth by Moore was a conversion cause of action which protects interference with personal property and interests, and that he was robbed of his interest-his cells, and their potential uses post their removal 

    -The court says that this is a novel claim and that they want to be careful because they could be potentially setting a precedent where every research company must know how their cultures were obtained and what informed consent happened, which is a large burden

   -This is a case of property theft and unlike in public policy cases of images or body parts being stolen, every human being possess the ability to make the cells Moore had 

    -There is also two types of property ideas, one where a person has interest in an asset because they put some labor into it, so it is theirs, and the other is that of personhood property, that something is so closely associated with a person and who they are that it becomes their interest, and their is debate over whether Moore's property claim is one of personhood property 

-The court does not grant the conversion claim because it says there is not pervious cases proving that an object such as cells is able to be claimed as an interest by a person, and because there is a law in California saying that all body tissue must be destroyed so he does not have control over his cells in this matter and therefore does not have property rights over them

    -The last reason the court gives for not granting the conversion claim is that he does not have rights over the cell line or any products produced from them because patents are about actions, not naturally occurring substances, and Moore did nothing to actually develop the line or create the products 

    -Because there is a patent the naturally occurring cells are not what is valuable

    -Moore retorts that he is seeking compensation for what occurred before the line was patented as we was the but cause for the invention, and that he should be treated as a joint-inventor 

-There was also a question by the court over whether they should extend conversion law to give him a claim in the case, and the majority say no because allowing this claim would hinder research by restricting access to materials, and because the legislature should be making the policy not the courts 

    -The defense retorts that there is a secondary public policy argument that people have a right to what they should do with their own bodies 

    -The philosophy of judicial minimalism used by the court in this case is very fair weather, where in some cases the court will be modest and in others say the legislature should have no control over the courts decision

    -The court also says it does not need conversion because the other two charges are sufficient protection for Moore and others, however placing a bigger punishment on an action is a bigger deterance

The Henrietta Lacks Story

-Henrietta lacks was a woman who was a poor Black tobacco farmer, and when she was 30 years old she was diagnosed with cervical cancer

    -She went to John Hopkins to get treatment and before she got the treatment her doctor cut a little piece of her tumor off and put in it a dish

-Henrietta's cells mysteriously never died and so the researchers trying to grow cells outside of the human body used them, and they double their numbers every 24 hours 

-HeLa cells were the first immortal human cell line and all these scientists asked John Hopkins for the cells and they got them, still without the knowledge of Henrietta

-The operation got so big 6 trillion HeLa cells were made a week, and the cells changed science a lot, and helped develop medicine 

-The cells that grew super fast, also grew like that in her body and she died on cancer less than a year after having it 

-After a while researchers reached out to Henrietta's children about the cells and seeing if they could get samples from them, and the children did not really understand science, and they thought they were getting tested for cancer, and then they found out that their cells were being sold, along with her mother, and that they were making billions of dollars 

-At the time when the cells were taken, and when her families cells were taken after it was not considered legally or ethically wrong to do so, and in fact it was actually standard practice to take some ones cells, because there was so little known about them and there was not even an inkling that people could make money off of them, and informed consent was not a thing

-Also if Henrietta had been white and not poor she would not have be forced to go to John Hopkins for treatment and her cells would not have been sampled

-The most ethically complicated part of the story is when scientists went back to Henrietta's children and took cells, because informed consent was a thing in the 70s, and it was not standard practice to take someone's body materials without informed consent

    -If Henrietta's family had been an educated white family they would have been treated differently, but because they were less educated they were treated with paternalistic concern and that they did not have the agency to make a decision themselves 

-In around the 2010s Henrietta's genome sequence was released with consent from her family members, and that information also makes conclusions about them, and it was then taken down at the request of the Lack's family

-There is a new policy at NIH that use of HeLa cells has to be approved of by the Lacks family

-The current law though is that if a cell is taken for medical purpose and if it does not have your name attached to it the scientists do not have to get consent to use it. 

    -The general population wants to know if their cells are being used but does not really want control over how it is used because it is more about trust in the scientific community

-There is currently a policy about broad consent, consent to use cells in research broadly, and that it would be required even if the cells are taken anonymously. 

-A common argument for the collection of cells is that it benefits everyone and hurts no one, but a common response from minority communities is that not everyone has access to a doctor or healthcare