BSOC Prelim 2

I think it should be kept as a piece of history in defining what is wrong when it comes to medical research, but it shouldn't be referenced as a source of decision-making no matter how high quality. By continuing to use this there is a sort of justification for what the Nazis did and you are ignoring the evil history behind this

Ethically, the Nazis justified human experimentation because they treated humans, especially those in concentration camps, as means, not ends. They claimed that the end was the construction of a strong nation. This justified horrifying means.

- People are poor because they are somehow less fit
- Survival of the fittest applies to individuals in society
- Arguing that social stratification is biological

- These ideas are not only unique to the nazis
- took a lot of their ideas from the US
- admired Jim Crow laws
- Hitler applauded anti-immigration laws
- In the US one drop of black blood made you black

- Reinforcement of gender stereotypes
- Disregard for intersectionality
- Reproductive rights and autonomy

- The mixing of races causing the degeneration of the human race
- Ideas were strongest in the UK, US, and Germany

Eugenics: From Greek - "to produce" + "well born"
- increasing the race that is deemed better while eradicating the "lesser" race
- ex: sterilizing the mentally ill

1. Breed more of what you want
2. Remove qualities you don't want by isolation, sterilization, or death

- Sterilization
- Marriage Restrictions
- Forced institutionalization
- Racial and ethnic discrimination
- Selective breeding

It places a strong emphasis on the outcomes or consequences of its actions and policies. Proponents believed that by selectively controlling human reproduction to improve the genetic quality of the population, they could achieve certain desired societal outcomes. However, this led to many atrocities, such as violation of individual rights, discrimination, injustice, and dehumanization.

Nazis' got to the holocaust by thinking of the nation as a biological organism where places had to be improved and some places had to be eradicated.

- Anti-Semitic Legislation
- Nuremberg Laws (1935)
- codified the legal basis for discrimination against Jews
- Forced Emigration
- They imposed heavy emigration taxes, confiscated property, and forced Jewish individuals and families to leave the country
- Deportations
- Jews were forcibly deported to concentration camps and extermination camps, where they were subjected to inhumane conditions and mass killings
- Euthanasia Program
- Eliminated people with disabilities with gas chambers and other methods, and it provided the blueprint for the Holocaust

Sterilization laws: sterilizing mentally ill people and people with hereditary illness

Population control: 4 child policy for Aryan Germans, legalized abortion for Jews and later Polish

Euthanasia: Granting a "mercy death" to anyone a physician deemed "incurably sick", encouraged paternalism

Nuremberg Laws: Exclude Jews from citizenship, forbidding marriage and sexual relations between Jews/non-Jews

- Accountability
- Establishing Legal Precedents
- Deterrence - the trials were meant to send a strong message that such actions would not go unpunished
- Establishment of international legal norms

- 23 doctors and administrators put on trial
- Charges: war crimes, crimes against humanity
- 15 were convicted

- No laws that stated that what the doctors did was wrong
- Doctors argued that they did not violate Hippocratic rights and that what they were doing was for the good of the nation

- Medical Expertise and Specialization
- Professional Codes of Ethics
- Commitment to the Hippocratic Oath

No, they were not abandoned because they unfortunately were helpful
EX: Nazi's hypothermia data helped develop cold-water survival suits for Canada's fishing boats

10 Codes
Set a precedent for voluntary consent of the human subject is absolutely essential
- the decision should be absolutely their own without coercion; should be an enlightened decision
- the experiment has to be something that you will get good results from

I feel like it's both. From what I can remember black people have been used as test subjects, with no consent ever given. The Kano study, Tuskegee, Henrietta Lacks, and Sara Baartman, are just a few names of black people who have been subjected to unethical research. And instead of trying to right these wrongs, we see that this remains consistent in the medical system. The medical violence toward black people continues to happen every day. Black women do not get enough epidurals because white doctors are under the impression that black women feel less pain than white which is untrue. These implicit biases are directly impacting black patients.

- Longstanding institutions
- Strong clinical training
- Quality of Medical Education

- Connection to slavery
- Use of unethically sourced Cadavers - the acquisition of bodies for anatomical studies, including dissection and research, was often done in unethical ways
- Informed Consent
- Ethical treatment of enslaved patients - subjected to medical experimentation and surgical procedures without their consent or adequate medical care
- Racial discrimination

- The father of gynecology
- He developed extremely helpful tools and techniques for gynecology

These women came to him for extreme vaginal pain and were soon subjected to experimentation without their consent

He experimented on enslaved women without anesthesia

He operated on her 30 times without her consent and without anesthesia

Kantian Ethics
- People shouldn't be used as a means to an ends
- Enslaved women didn't benefit from these experiments; the most who did was white women
Paternalism
- Power imbalance
- making this decision himself
Autonomy and consent

They let the disease run without treating them for over 40 years
- recruited these men who were poor and illiterate
Were never treated with available treatments and left literally to die with no knowledge that they had this disease

The US claimed that inequalities based on socio-historical injustices were based on biological differences

Survival of the fittest
- allowing the "weak population" to die out because they are not biologically strong like white people

The black race would die out because they were biologically unfit for freedom

- A justification
- they weren't going to get treatment regardless so it's okay to not treat them

- Not only did they not treat them, they gave them false treatment
- Actively prevented these people from getting treatment from the military
- Had the arsenic (slowed the spread) treatment but gave them inadequate treatment so they would still be sick

- The men's recruitment
- Told they were being treated but were not
- though they were treated
- Painful spiral taps
- endangerment
- told them this was special treatment

They asked the military not to treat them because they were research subjets

- These men were spreading the disease because they thought they were being treated

- So everyone they had sex with was in danger

People can always use a utilitarian argument that this is helping a greater amount of people so it can be justified. Or consequentialism that the outcome outweighs the consequences.

- experimentation can't be justified if people are being harmed
- Henry Beecher; people won't sign up for an experiment if they know they will be hurt so his study was unethical cause they lied

Seems to be a story of a child that is abused and neglected in order to benefit the greater fictional society, Omelas

"Everyone's well-being in exchange for this child's suffering"
- Point of the story: Who or what are we willing to sacrifice in order to create the society of our dreams? How much human suffering is justified?
- The Nazis argued that the unfit members of their society needed to benefit the country during the war
- LeGuin's question: "Is his suffering justified for the betterment of others?"

- No - humans aren't a means to an end. You have asked the people who are suffering whether they think society is just, and they would probably say no.

- the idea of a human being suffering for my benefit makes me uncomfortable and sick, but is that not what already happens? We just don't see it. We are able to continue in our society because we do not have to face all the horrible things that happen just for our benefit. It is like the crowd in Hora de los Hornos. If everyone had to drive by the factory where the calves are being slaughtered, then a lot more people probably wouldn't eat meat.

1. Do good societal ends justify causing harm to research subjects?
2. What kinds of control are needed to ensure the safety of those being experimented on: human controls or bureaucratic control
3. Informed consent: who can and cannot consent/what does it really entail?

- The goal of clinical research is to develop generalizable knowledge that improves health or increases understanding of human biology

Two types: 1) experiments done in the course of treatment and 2) experiments done solely to gather data about a treatment

Concern about ethical experimentation did not begin with the Nazis, Claude Bernard was one of the founders of experimental medicine and talked about experimentation pre-Nazi era

He is saying that the ends never justify the means. There is this conflict in the doctor between doing what is best for the patient and doing what is best for the research. There are more and more medications that need to be tested, as well as procedures and other biomedical innovations, this means there is a need for experimentation.

The Nuremberg Code was developed by physicians in consultation with lawyers to figure out how they could prosecute Nazi doctors. The doctors who made this code did not think that this was about them.

- Declaration of Helsinki, World Medical Association, 1964
- a precursor to the National Health organization
- focused on doctors who were doing research on their patients --> changed the focus on ethical principles
- placed focus on the rights and responsibilities of the doctors and physicians

- Belmont Report, National Commission for the Protection of Human Subjects of Biomedical Sciences in collaboration with WHO, 1979

- International Ethical Guidelines for Biomedical Research involving Human Subjects, Council for International Organizations of Medical Sciences in collaboration with WHO (CIOMS), 1982

Helsinki builds upon the Nuremberg Coode but broadens its scope. It recognizes the rights and welfare of research subjects, emphasizing their well-being, while also addressing the responsibility of physicians and researchers to contribute to the advancement of medical science and public health.

This matters because it recognizes the importance of conducting ethical research that respects the rights and well-being of research subjects.

Ethical Principles:
- informed consent
-beneficence - doing good
- respect for autonomy

It reflelcts a more comprehensive and nuanced approach to ethical research in medicine.

- Balancing individual rights and public interest
-Ethical research as a dual role
- Transparency and Accountability

- favored training conscientious and empathetic researchers and said that most of the ethical errors are due to thoughtlessness and carelessness. This is connected to virtue ethics and how he basically is saying that people are making innocent mistakes

Stringent regulations are better protections for research subjects
- legal framework
- oversight and enforcement
-protections across the board
-consistency and transparency

No. I think that there are far too many people on death row who have been declared innocent or who are in prison with little to no evidence. To say that someone on death row doesn't deserve the right to choose what happens to their body is operating under the assumption that everyone on death row is guilty and deserves to die.

US passed a lot of laws to prevent research on human subjects, so a lot of phara countries would do experimentation in other countries.

1. Consent that is less than fully informed, e.g. if the subject is illiterate
2. Consent that involves a therapeutic misconception. That is the patient gives consent, but
believes the research is intended for therapeutic benefit.
3. Manipulated consent, e.g. when a subject is told that consent is the “price” for
treatment.

- worse for African American women
- Gender issues at all levels feed into and reinforce each other

- poverty and discrimination
- greater burdens of work
- domestic violence and rape

- life expectancy
- maternal morality

the death of a woman while pregnant or up to 43 days after birth if the
death is related to or aggravated by the pregnancy

- worst maternal mortality globally

- 3x that of France
- consistently rising maternal deaths
- the numbers are also worse by race

indicator of inequality in the US
- blacks and natives have the highest maternal morality deaths

over 80%

the UK

- midwives
This matters because
- midwives play a crucial role in providing care to pregnant individuals
- access to skilled midwives is associated with lower maternal mortality rates
- midwives can provide culturally competent care, reducing health disparities and improving access to care for marginalized communities
- midwives are known for providing high-quality, patient-centered care

- where there is no place to get maternal care so you have to go far distances to get care
- a lot of these places are located in the south

36%

these numbers are getting worse

no constitutional amendment about maternal morality

7,21

Reasons behind this:
- reduced access to safe abortion services
- delayed or inadequate medical care
- impact on low-income and vulnerable populations

- a widening gap of health disparities for marginalized groups
- medical violence
- stereotypes (implicit biases)
- believing that minority women are stronger than the average white women

Ethical concepts
- paternalism
- autonomy
- moral relativism
- Kantian ethics
- distributive justice

- women like being treated by women
- minorities by minorities

sexism toward women in the medical world
- sexist jokes in classrooms
- sexual harassment
- weaker reference letters
- lower income

- they are entering the profession but are not finishing medical school
- dropping out more than men

12 females to 1 male but they get paid less money

- other people are biased, not me
- controlling bias means controlling how people think
- under-representation is a pipeline problem
-promoting diversity means contravening meritocracy
- we have to "fix" the women

*some biases are systemic
*gets worse for underrepresented groups

- gender discrimination correlates with low morale, low self-esteem
- some patients prefer a practitioner of a specific gender
- women follow guidelines and communicate better

- told that having children will harm their career

- excluded on the basis of chances of pregnancy and hormonal cycles

8/10 drugs were pulled because of women's health issues

- some kinds of biases are just straight-up discrimination
- working on it helps, but does very little to tackle ongoing economic, structural, and institutional forms of bias

- a 30 yr old woman was diagnosed with cervical cancer with 5 children
- very aggressive; immune to radiation
- her cancer allowed for this breakthrough
- helped with the cultivation of cells
- cells have been helpful for like 70 years now; the bedrock of research

- you can propogate these cells semi-infinitely
- cancer cells allow for multiple division not just a set amount of time

- there was no law at the time that made this illegal

- no laws that prevented scientists from taking someone's body and using it for experiments
- US laws about consent had not been created

Cancer research

- it is so obvious whose cells they are
- made it possible to genetically connect Lacks to her descendants

- might release genetic information about a whole host of people

- you have to consent by a written form to use your DNA for research, but this is a wishy washy fine line

Maximization; utilitarian
- the idea that if you are helping a greater amount of good it should be done

However, this is not right in the case of relational autonomy and consent it outweighs these factors because if you a person consented to this that doesn't mean everyone else in your family consented and so where do you draw the line between that especially if like HeLa you have hundreds of descendants.

- internet chat groups to share information and experiences usually about specific medical conditions

- connected a lot of patients and helped them alleviate some of that loneliness

Pharma and web companies wanted patient data and things with it and make money
- so they created these forums and monetized that information from patients

web scraping, purchase of health records, and other non-consensual means of gathering patient data

- if it gets selled off then anyone can buy it because it becomes an asset and someone can by this patient data and have it

- inaccurate and irrelevant data
- spurious correlations
- random patterns

- with treatment you understand exactly what it is being used for however with selling you are allowing things to be broadcasted and sold which shows that you are no longer interested in creating proper treatment plans

- it gets put in a databse and you are still identifiable because yur DNA identifies you
- can be used to find your familiy etc....

60%

- doesn't do a lot ensure genetic privacy
- doesn't prohibit life, disability, and long term care insurance companies from asking that info

He was 53 years old, diabetic, and dying of heart disease. He believed that it was the only thing that could work

No the kidney had been transplanted

The doctor decided this; this was ethically problematic because a patient was dead if the physician said so. There was no uniform definition of what death was.

He lived only 18 days

He died of pneumonia
- immune suppressants made it easier to get sick

- medical milestone
- global interest
- pioneering surgeon

approximately 594 days

Blaiberg did experience improved cardiac function and was able to resume some activities, however, the portrayal of his health and his actual condition may not have been fully congruent

- improved cardiac function
- challenges and health complications
- need for immunosuppressive medication
- issues related to organ rejection
- impact on daily life

They were worried about the ethical problems that would arise from trying heart transplants

I don't think it's ethical to conduct experimental procedures because if people are on their deathbed bed they are more likely to be more desperate. Meaning they are less likely to think about the consequences that this would reveal

Kantians ethics
- first heart transplant; he wants results and this is the best way to get them

Paternalism
- people are more likely to trust a doctor

Relational autonomy
- his family should have a say especially if the patient is not mentally competent

- ventilation
- even if they are brain dead, how do you define death in order to take them off the ventilator

- physicians
- religous people
- lawyers

They defined it as brain dead which was different than the previous definition which said that death happened when the heart stopped
- so the shift from the heart to the brain
- heart can still be kept going so are these people really dead

- some say brain dead
- some define it by the stopping of the heart
- some say too restrictive you can take organs to easily
- some say it needs to be more restrictive

- respect for autonomy and dignity
- end-of-life decisions
- legal and ethical frameworks - influenced by cultural, religious, and societal values

- physicians decided that it is morally okay to define people as dead if they are brain-dead
- problems
- people will still contest this; calling you a murder

1) adopt the American Academy of Neurology's criteria for death
2) exclude hypothalamic function from being a consideration
3) allow for an apnea test on an unresponsive patient without explicit consent

1) The AAN's criteria leave a small window that someone could be alive
2) Some manifestations of biological life would be ignored
3) The apnea test does nothing for the patient but might induce brain death if it hasn't occurred

- family fought brain death
- information reopened debates on the definition of death

- show how an experimental surgical technique was fraught with questionable ethical decisions
- show how new technologies and new techniques open new ethical questions/problems
- show how science can give us facts, but cannot adjudicate more questions
- show how the idea of brain death equates personhood with consciousness (an idea that has been contested)

I think a good death, is one that is painless and peaceful. If someone I loved died I would hope they felt fulfilled with life and had overcome any regrets they may have had. To me "death with dignity" means giving individuals the right to die with the same autonomy and agency in which they lived their lives

- belief in the value of technology to improve lives
- fear of death and belief in extending life
- among physicians: preference for action/intervention over inaction

- we tend to believe technology can improve our lives but fail to see how it is also damaging
- obsession with youth culture
- botox, surgeries, anti-aging creams
- hard for physicians to understand that sometimes doing nothing is the best way to help a patient

- I believe that technology does improve my life. I have access to millions of things. I am informed on a variety of different topics, I can communicate with my family from around the world as well. I don't think it is difficult to imagine living with the opposite value cause I understand how negatively technology can impact someone's life.

- with access to the internet you may be less likely to go to physicians for a diagnosis and choose to self diagnose which can be dangerous, however then we have technology like dialysis and ventilators

- How do we weigh technological possibility against prolonged suffering?
- How do we negotiate physician concerns, patient wishes, and family wishes?
-How should these issues be communicated (with patients, with families?)

- mechanical ventilator
- can keep someone alive long enough for the body to heal and take over
- can also keep someone alive beyond consciousness
- kidney dialysis machines
- can extend life for a long time
- people have to do it 3 to 4 times a week in order for it to last
- people wanted to die cause they felt so tied to the machine
- CPR
- painful, the numbers are not good for survival

(1954-1985)
- went into an irreversible coma at age 21
- The NJ Supreme Court ultimately ruled
- unanimously that if physicians saw "no reasonable possibility" that Quinian could recover, then removing support systems "would not be a homicide, but rather expiration due to existing natural causes"
- started a new practice of living well where if people can't speak for themselves their wishes are still respected (not always the case)

*lived nine years with nothing more than a feeding tube
*case of when technology gets ahead of the legal system

- not giving the family the entire picture
- no clear indication of whether or not their father will live

- relational autonomy
- the kids don't have enough information to make a decision for their father

- two weeks later the father asks to die and his wishes are ignored
- some paternalism happened, but it started from the kids not having enough information from the doctor

- autonomyelational autonomy
- consent
- the fall of paternalism

- hospital deaths rarely go exactly the way patients want, however this time it did which is pretty good

- life support is a way of doubling down on those cultural values surrounding death
- the faith in technology to prolong life; but when do we stop using technology and start focusing on the people

- had brain cancer at 29, and moved to Oregon in order to have a physician-assisted suicide
- advocated for death with dignity
- for people to have the right to choose how and when they die (for the terminally ill)

- As someone who is religious the idea of natural law comes into play because this seems like playing God in deciding when we should die
- however, I understand where people are coming from when deciding whether or not they wanna live suffering it gives people a chance to take control of their lives again

Concerns
- when do we draw the line?
- push to expand it to the mentally ill who wanna die etc...
- or coercion from family for their own personal gain

- 1973: Roe vs. Wade - women had constitutional protections for abortion under the 14th amendment which prohibits states from curtailing citizens' life, liberty, or property without due process of law

- 2022: Dobbs vs. Jackson Women's Health: No constitutional protection foro abortion existed because "procuring an abortion is not a fundamental constitutional right because such as right has no basis in the constitution's text or in our Nation's history"

- The dissent in Dobbs said the decision would strip women's "status as free and equal citizens"

- anti-abortion activist are trying to appeal to emootiooon so they foocused on crrreating an image tthatt looks like a recognizable human. Whle the tissues in the fetal dish doesn' recognize any potential of life

- pro-life
- fetus has the right to be born
- pro-choice
- focuses on the mother, mother's rights are greater than the fetus

- they want you to believe that the fetus is the little person and they maintain the focus on the fetus and not the mother

- they are saying that the fetus is viable and valued the same as other humans, so it must not be killed
- no it is not effective because its not true

- natural law
- Kantian ethics
- consequentialism
- autonomy

- the fetus is not able to decide for itself; the mother is the primary caregiver of the fetus
- her body is carrying, feeding, and just overall making sure the baby is healthy so abortion should focus on the mother cause all of that takes a lot of mental and physical strength

b/w 22-23 weeks

many in the medical community believe that a fetus can't feel pain until 24-25 weeks

in the 10th week

- sperm meets egg boom!! person
- conflating life and personhood (the state of being a social embodied, and sentient being)

focus on biological markers attempts to peg moral beliefs to biological markers naturalizing the idea of fetal personhood

- not treating the mother as a person

- increases in maternal mortality
- adverse economic outcomes
- lack of access to high-quality care

- had to be taken to Indiana to get an abortion
- activists denied it happened until the rapist admitted it and then they attacked the doctor who did the abortion who was then sued multiple times by the state and harassed by activists (pro-lifers)

- couldn't get an abortion because all the doctors would be charged
- so had to deliver her daughter 22 weeks earlier which put her life at such a huge risk that she was in the ICU for a week
- baby had 3-4 days of suffering
- Amanda had weeks of mental and physical suffering (nothing pro-life about it)

- Kantian ethics
- consequentialism
- natural law
- autonomy

- tends to focus on middle-class, cis-gender white couples (their tragedies are real)
- tends to focus on immediate medical issues
- loses sight of justice issues: economic and social struggles of poor women and women of color who are seeking abortion

26 states with abortion bans
- none guarantees paid family and medical leave
- 18 have gender wage gaps above the national average
- 17 have poverty rates for children above the national average
- 19 have not extended Medicare coverage for 12 months postpartum
- 22 have poverty rates for women above the national average
- only 4 legally require insurers to cover an extended supply of contraceptives

- marginalized groups (african american women)

- they are leaving places with abortion bans, but this is causing those places with already bad healthcare systems to suffer even more cause there are fewer ob-gyns present