Medical Ethics Notes

The Basics of Moral Thought

• What is moral philosophy?
• Non-Moral Questions:
  • Is it illegal for a doctor to perform surgery on an unconscious patient?
  • How many people in the United States think euthanasia should be illegal?
  • What are the medical side effects of a medication?
• Moral Questions:
  • Should a doctor prescribe a placebo to a hypochondriac?
  • Who may make medical decisions for a child?
  • When may doctors refuse to treat a patient?
• Moral and Non-Moral questions are fundamentally different in how they are answered and analyzed.
• Disagreement in moral philosophy is common because moral philosophy is hard.
• Always ask: But is it right?
• Moral questions bear essentially on matters of value and justification. They concern the kids of answers we can give when people ask us: Why did you do this?
• Which of these are moral questions?
  • Should a doctor prescribe a placebo to a hypochondriac? –
    •  Moral issue: Beliefs and medical knowledge vs. body autonomy.
  • Is it illegal for a doctor to perform surgery on an unconscious patient? –
    • Moral issue: Issues of consent and body autonomy. If they don’t, could the patient die? Does the patient have a DNR? 
  • How many people in the United States think euthanasia should be illegal? – 
    • Thinking that it should or shouldn’t be illegal grapples with the morality of euthanasia.
• Legality and morality do not always align and often intertwine in issues.
• Moral questions bear essentially on matters of value. In order to address them, we need to think about what is worth caring about and why.
• Non-moral questions may bear on matters of value. But we do not need to investigate these moral issues in order to answer non-moral answers.
• Morality is fundamentally different than legality.

How is Moral Philosophy Done?

• 1 – Identify the choices.
• 2 – Respond to a “moral sense”
  • Trust your instincts, even when holding the minority opinion
• 3 – Invoke moral concepts
  • Part of our goal in this class will be to make available to you some important moral concepts with which to name these concerns.
• 4 – Seek a resolution
• Choices Doctors Can Make:
  • Let patients make decisions, advise on those decisions, even when disagreeing with the patient’s decision
  • Declare patient incompetent and force choices
  • Lie to convince a patient or tell the truth
  • Palliative/hospice care vs. death with dignity
  • Refer patient to another doctor
  • Set up counseling
  • Offer pain medication when necessary
  • Outpatient vs inpatient care
  • Use family members to convince patients
• Moral philosophy typically involves significant disagreement
• Moral philosophy is fundamentally about dialogue, and finding reconciliation.
• Some Principles of Medical Ethics:
  • Beneficence vs. nonmaleficence
  • “First do no harm”
  • Respect for patient autonomy
  • Veracity – telling the whole truth, no lies of omission.
• An Assumption
  • Beauchamp and Childress (2009)
  • “Explicit acknowledgement of such dilemmas helps deflate unwarranted expectations about what moral principles and theories can do…in some cases the dilemma only becomes more difficult and remains unresolved even after the more careful reflection.”
  • Bad and worse options

The Refutation of Medical Paternalism

Violations of Autonomy

• How can others violate our autonomy? There are a whole lot of possibilities, and it is worth thinking briefly about their variety.
• Forcing a decision, a patient doesn’t want to make.
• Ambiguity of options / obfuscation 
• Manipulation, coercion, deception, hypnosis, emotional manipulation, “nudging”, shame/guilt, framing options with biases, illusion of choice
• Children and children’s autonomy vs. parents/guardians (ex. My Sister’s Keeper)
  • Christian Science / Amish / refusal of treatment by parents / etc.
  • How involved should a child be in their own medical treatment/knowledge.
• Book: Nudge (come out a few years ago) – Libertarian Paternalism (ex. Soda Tax), book to read: An Anthropologist on Mars

Upsetting Information

• Should you go along with a client to give hope?
• Should you withhold upsetting information from their clients?
• Physical/financial costs
• Assumptions of emotional strength
• Goldman’s Article
  • Focuses on the question: Should practitioner’s withhold upsetting information from their clients.
  • Allowing individual free choice is likely not to cause harm – allow patient autonomy
  • Page 94
  • Empirical vs. moral arguments
• Goldman 
  • Patient’s choices can lead to harm, but you cannot interfere because greater harm comes from refutation of autonomy.
• Possibilities – Imagine ranking these by preference:
  • X doesn’t happen
  • X happens but I don’t know about it
  • X happens and I know about it
• Would you want to know if something bad was going to happen?
• One challenge is that it will be extremely difficult for doctors to determine whether disclosing upsetting information will generate these harms or whether it will actually prove to be in the patient’s long term interest.
• Allan Buchanan advances this as an argument against medical paternalism. What moral concerns underlie this argument?
• Is this argument enough for us to reject medical paternalism? Allen Buchanan seems to think it is. Goldman does not. Why not?
  • Harms are less important than autonomy.
  • What might harm may also help.
  • There are no right answers.
  • Risk-benefit calculations.
  • “The doctor should act on his best estimation.”
  • Inaction vs action – Favor in not telling vs telling. Telling is irreversible. 
    • (The trolley problem)
  • Buchanan – A physician should always tell a patient upsetting information because you never know if it will help or hurt.
  • Goldman – Make best judgements case by case when it comes to divulging information. Err on the side of caution.
• Much disagreement isn’t in practical application but in why things things should be done a certain way, not in the action or inaction itself.
• Goldman – Paternalism is unacceptable in medical contexts.
  • 1 – Doctors are better equipped to make medical decisions for their patients.
  • 2 – So doctors ought to make decisions. 
  • Goldman argues against this medical paternalism.
  • 1 – Is likely false – The relativity of values
  • 2 – Even if the assumption is true, it doesn’t warrant the conclusion. The value of self-determinacy.
• Types of Argument:
  • Argument makes sense but assumptions are wrong.
  • Assumptions are right but conclusion doesn’t follow/is not agreeable.
• The Relativity of Values:
  • Goldman argues that doctors are not better equipped to make medical decisions than their patients, because:
    • Patients do not necessarily prioritize their health over other concerns.
• Concerns:
• Work
• Children
• Cost
• Inconvenience / Apathy
• Quality of life / large scale change / diet
• Death with dignity
• Religious barriers (against a religion to seek treatment/medication/blood transfusions)
• Physicians do not necessarily know their patients values.
• Some people don’t always know what they’d prefer.
• Against Medical Advice forms
• Value of self determination
  • “Personal autonomy over important decisions in one’s life, the ability to attempt to realize one’s value ordering is indeed so important that normally no amount of other good, pleasures, or avoidance of evils can take precedence.”
  • Think of autonomy as owning your choices.
    • A right to to be wrong, without interference.
• Questions:
  • Is autonomy important? Is it more important than other moral goods? Why?
  • Which kinds of choices “belong” to patients?
  • How should patients make these choices?
  • What does it take to respect someone’s autonomy?
• A definition of medical paternalism:
  • When a doctor makes a choice on the patient’s behalf and restricting the choices of the patient.
  • A medical practitioner attempts to make a choice that belongs to the patient
    • Without the patient’s consent
    • For the sake of the patient’s help
• But some choices don’t “belong” to the patient
• The limits of autonomy
  • Schwartz opens his article with a short dialogue. Can we get a reenactment?
    • Is this the right choice for the patient?
    • Is this the patient’s choice to make?
    • First do no harm – nonmaleficence
• What is harm?
• Medical vs emotional vs mental harm
• Laws – 
  • Non medical solutions
  • Scientifically futile methods
  • Are the benefits medical?
• Primary focus: Medical Needs
• Schwartz identifies 3 guidelines:
  • Cannot request scientifically futile treatment
  • Patient cannot be treated by non-medical means
  • Patients cannot demand to be treated in ways that are inconsistent with the ends of medicine / established medical uses
• “…patients are not permitted to demand surgery that is inconsistent with the definition of the scope of medical practice accepted by the surgeon. In their exercise of autonomy, patients may choose only from among reasonable medical alternatives. The hard question is how doctors, patients, and others define which medically and scientifically proven procedures are among the reasonable medical alternatives.”
• Demands vs requesting
  • A demand purports to impose an obligation on the interlocutor
  • A request is more about wishes and advice
• Autonomy as Authority
  • If a choice belongs to you, you have the authority to make demands. Others must respect those demands. They have obligations.
  • If a choice does not belong to you, then you have no authority to make demands. You may make requests.
    • But your interlocutor may decide whether she will act on your request.
• What are the ends of medicine?
  • Moral questions
    • Policy questions try to answer these
      • Becomes laws / standards / FDA guidelines
• Interpreted by supreme court when challenged
• Insurance companies involved – what they will pay for
• AMA – The DSM
• Medical malpractice guidelines
• The Wanglie Case
  • End of life care / Life support and vegetative states
  • Costs of care – money, time, beds in the hospital, medicaid costs
  • Quality of life
  • Body vs brain death
  • Schwartz believed that the hospital approached the case from the wrong angle.
  • Patient concerns vs authority of patient concerns
  • Goals: life vs quality of life
  • “The question really, was whether the provision of this kind of treatment in this kind of case was outside the limits of medicine and, thus, beyond her power of choice.”
  • The doctors make decisions, patients can shop around to find a doctor that aligns with what they want.
  • Limitations come about by what doctors collectively will and will not do/treat.

Who according to Schwartz, should decide the scope if medicine?

• Schwartz raises important questions but his answers are not necessarily agreed on.
• Who decides?
  • Should a patient undergo treatment x?
  • Who should decide whether a patient will undergo treatment x? 
    • This is a moral question.
  • Who should decide who should decide whether a patient may undergo treatment X?
    • This is a question of policy.
    • Government in many cases defines authority, the government is accountable to the people – ties to political philosophy
  • Who morally has the authority to make this choice?
• These are central questions in “The Right to Die”
  • Is autonomy important? Is it more important than other moral goods? Why? – Goldman
  • Which kinds of choices “belong” to patients? – Schwartz
  • How should patients make these choices?
  • What does it take to respect someone’s autonomy? – Ackerman
• Threats to Autonomy
  • Ackerman’s crucial point is that medical paternalism is not only a threat to a patient’s authority. What else can compromise our autonomy? 
    • The sickness itself
    • Societal constraints
    • Ignorance
    • “Knowing what you don’t know” causes uncertainties
    • Denial
    • Depression
    • Physical constraints
    • Cognitive constraints
    • Psychological constraints
    • Prejudice
  • Ackerman’s question is: How can doctors work to return control to patient?
    • Technically competent therapy
    • Provision of information
    • Target interactions to specific patients
    • Support groups
    • De-stigmatizing help and disability
    • Address concerns about/with family members
    • Emphasising the severity to a person in denial does more harm than good.
  • “…The therapeutic relationship is not a typical commodity exchange in which the parties use each other to accomplish mutually compatible goals, without taking a direct interest in each other….”
  • “In this sense, the doctor-patient relationship is not unlike the parent-child or teacher-student relationship.”
  • Ackerman argues that doctors shouldn’t bypass the patient’s express wishes but should engage with them in a way that attends to the external threats to their autonomy.

The Right to Die – Velleman

• Theological Controversies
  • Our lives our not ours to destroy/end as we please
  • Suicide as a moral evil/sin
  • Can become a religious debate (existence of God) or political debate (secular debates and what role does God play in the law)
• The “Dignity” of Youth
  • Denying people a right to die denies a right to die with dignity
  • Can be physical or emotional dignity – A general sense of human dignity
  • Issues that say those with disability or the elderly are considered to be without dignity – death with dignity is considered “abelist” by some
  • Dignity based arguments are not the strongest
• Benevolence
  • “I strongly believe that a person’s life can sometimes be made worse by being prolonged, and that a swift and painless death can then be a benefit”
• The Claim of Velleman’s Paper
  • He’s not saying physician assisted suicide should be impermissible
  • He doesn’t think PAS should be illegal.
  • He thinks physician’s shouldn’t be required to comply with patient requests.
  • Is PAS a demand or request? Does the choice belong to the patient/doctor/both?
• The Strategy
  • He makes his case by thinking about why someone might think his claim might be wrong and then responding why he is right.
    • I believe x, you might not believe x because of y. However…
    • But y is false
    • But even if y is true…
  • Moral vs policy issue
  • The more options the better
    • Unless we are likely to make mistakes about whether to exercise an option, the value of having the option is as high as the value of exercising it and no lower than zero.
• Patients can request the right to die (it is their right) but they cannot demand it of the doctor (the doctor has rights as a human being as well.)
• He makes his case by thinking about why someone might think his claim might be wrong, and responding to that thought.
• Velleman is arguing that doctors ought not be required to accede to these requests.
• Velleman’s Thesis: Patients should not have the power to demand PAS.
  • Sometimes, giving someone an option can make them worse off.
    • PAS is an absolute worst case scenario that shouldn’t be illegal, but shouldn’t be offered as a viable choice.
    • A patient can request PAS but cannot demand or be offered it.
  • Giving the option might force justification or pressure to consider/choose that option.
  • Should a patient request PAS, a physician has the choice to listen to or deny that request.
  • Limiting demand for PAS is not medical paternalism.
  • Cases that subject us to certain kinds of pressures
    • Suggesting euthanasia implies a patient’s life isn’t worth living and encourages consideration for that option when it wasn’t previously considered.
    • Negotiations
    • The night cashier
  • Cases that deny us the possibility of having the status quo without choosing it.
    • The dinner party
    •  
  • Notice that in each case, we assume that the protagonist will choose well from among the available options.
  • These cases aren’t medicial, they are varied, familiar, and accessible  which makes this a good paper showing his argument and concerns in a broad context.
• Antithesis: Patients should have the power to demand PAS.
  • Having an option may be better than, but never worse then, not having that option.
  • So patients should be able to chose PAS.
  • Remember Goldman:
    • Recognizing the argument FOR Medical Paternalism
    • The choice isn’t the point but making the choice for oneself is valuable in and of itself
    • Relativity of values / value of self-determination
• Physician-Assisted Suicide
  • Making an option available may harm someone:
    • First, it prevents them from enjoying the status quo by default.
    • This might bring certain pressures to bear on them.
• “This problem with this perception is that if others regard you as choosing a state of affairs, they will hold you responsible for it; and if they hold you responsible for a state of affairs, they can ask you to justify it.”
• And we care about whether we can justify our choices to others. Most of us do, anyways – that’s just a psychological fact about human beings as social animals.
• Responsibility for Life
  • Whether you perceive yourself as a burden
  • If given the option outright, burden to justify the will to live rather than if not given the option, justifying the wish to die.
• Often, the patient will feel this pressure even if others do not say a word.
• Velleman’s Claims:
  • Once someone has a choice about whether they will live or die, they will be perceived as responsible for whether they live or die.
  • Once people perceive her as responsible for whether she lives or die, they will expect her to be able to justify her choice to them.
  • In light of certain facts about our culture, it may be unreasonably hard for certain patients to meet these expectations.
  • So giving someone the option of electing to pass onis, in some cases, tantamount to giving her a choice that she cannot justify to others.
  • PAS vs life-support end
    • Active vs passive causes of death
• What would Ackerman say about Velleman’s claims?
  • External pressures on a patient’s autonomy
    • Ex. Women in a bar being offered a drink, and the expectations associated
• Responsibility for Life
  • Autonomy 
    • Medical Paternalism
• Violates autonomy
• Why doctors should intervene
  • Supporting the patients and mitigating that which can interfere with autonomy
• Ignorance
• Psychological constraints
• Social constraints
• Velleman’s Prescription
  • Patients should be able to request but not demand PAS
  • The physician can deny the request
  • No strict guidelines for illegalizing of PAS
  • Generally against the right to die
• Weighing Feminist Concerns – Martin
  • Against the right to die
    • Martin begins by sketching the positions of some feminists whose arguments brush up against velleman’s
    • Susan M Wolf advances various concerns about women’s requests for PAS. For instance, she observes that, relative to men, women receive inadequate pain management.
    • Compare the research presented in Silverstein, “I don’t feel your pain”
      • Minorities receive pain management are inadequate
      • Less pain empathy
      • Assumes these people are endured more hardship which inoculates against pain – Problematic and false
      • Mirror neurons
      • Sympathy vs empathy
      • Must think about the social construct
      • Ageism and ableism, sexism and racism
    • How would these conditions interact pervasively with the distribution of a right to demand PAS?
    • “Certainly American society devalues woman who are ill, disabled, or even just old. The traditional valorization of women;s self-sacrifice may affect women’s readiness to request death and the physician’s responses it this treatment.”
    • “Principled caring”
      • Similar to Ackerman and Velleman
      • “Woman may be in more danger of making coerced decision”
      • “While we work for changes in the system of domination and oppression, are we to deny woman and others who suffer under the oppression of patriarchy what might be the only way out that is suffering right now?”
• Wolf’s Argument
  • “The traditional valorization of women’s self-sacrifice” empowers people to coerce woman into requesting PAS.
  • So medical practitioners ought not accede to these requests.
  • Both complicates the premise and argues that the conclusion doesn’t follow.
  • Challenging the premise
    • “The ill or dying person is being asked to forego acting on her own interests in order to
• Avoid making her relatives look like selfish, uncaring brutes
• Refrain from challenging the comfortable belief that life is always worth living.
• Avoid giving society at large a push down the slippery slope in the direction of callousness toward those sick and disabled persons who do not wish to end their own lives”
• Challenging the conclusion
  • Disrespecting women’s agency
    • RAymond argues that, in court, “there is a pattern of acceding to male patients wishes over females – in end of life ffirs
    • Womens requests to die are held to higher evidentiary standards. 
    • “The gendered language” used in and by the courts “tends to discount women’s agency”
    • Raymond concludes that “gender ideology in valorizing passivity may actively collude with the medical profession in keeping dying suffering women alive”
    • “Women are generally socialized to be less assertive than men when dealing with mostly male authority systems. Authority systems are more likely to discount women’s voices.”
    • Women do not persistent in their requests, because they have been taught to defer to men’s judgements”
    • Society is taught to see women’s choices as emotional and irrational.
• The Story of O
• The value of choice
• Offering of the choice implies coercion
• Pain vs agency
• Inadequacies in pain management for woman and people of color
  • They track lines of oppression
• Martin worries that this will 
  • “condemn woman to suffering”
  • Reproduce sexist dynamics
• Case: Ash Falkingham

Gestation and Birth

• Autonomy in Context
• Which choices belong to the patient?
  • Goldman
• How should the patient make these choices?
• How can the medical practitioners help the patient to make these choices autonomously?
  • Ackerman
• Whether and when to terminate a pregnancy
• How is this issue typically answered in American public discourse?
  • Abortion considered murder; fundamental question: fetal personhood
  • Left and Right have a lot in common
    • “First, both agree that the legal permissibility of abortion turns on the question of fetal personhood.”
    • “Second, netiehr takes as pivotal the fact that gestation occurs inside someone’s body.”
    • “We don’t take such hardships as justification for murder.”
  • Little argues that out current moral discourse assumes a concept of personhood that overemphasis our separateness from one another.
  • This leaves us to only bad options: reducing the fetus to a tumor to which we owe nothing to acknowledging the fetal’ personhood as more important than the mother’s.
  • The Right to Life
    • Pro-life
    • “It includes…the right not to be stabbed on the street…; it does not include the right to life-preserving aid from a stranger, say or the right to be stabbed by someone trying to ward off my malicious attack.”
    • Lethal self-defense if necessary
    • Nuanced and limited – right to life is too broad a statement.
    • What exactly would the fetus’ right to life entail for the gestating mother?
  • Little accepts that claim that fetuses are persons.
  • One person’s rights ends where someone elses begins.
• Weighing vs Circumscribing
  • Weighing various concerns
    •  Ie. quality of life vs length of life
  • Sometimes we weigh on person’s interests against another’s
    • Ie. Who gets the transplant?
  • When one person “owns” a choice, their interests do not weigh against ours, but circumscribe our rights.
• The Burdens of Pregnancy
  • “Fetal geography”
  • Little thinks the state has no right to force a person to accept occupation by a fetus
  • Whose rights circumscribes whose?
• For the sake of argument, Little accepts the claim that fetuses are persons. She also accepts that persons have right to life.
• However, “a right to life” is very abstract. In order to respect people’s right to life, we need a more concrete sense of what this right involves.
• Consent and pregnancy
  • Consenting to sex is not consenting to gestation
• The Role of the State
  • “The fetus, of course, is innocent of malintent, indeed, of any intent, but the complaint here is not with the fetus, it is with the state…whatever the state’s beneficent motives for protecting the interests of the fetus, it matters that the method used for the protection involves forces others to have another entity inside them”
  • Defense with lethal force (“if someone comes at you with a knife, your right to defend yourself supersedes their right to life/not be harmed.)
• The cast of characters
  • The pregnant woman
  • The fetus
  • The State
  • Characters left out:
    • The physician
    • Does a pregnant woman have the moral right to demand that her physician perform an abortion?

Limits of Conscientious Objection

• Abortion vs Plan B
  • Epistemic issues/differences
    • With Plan B there is no certainty of pregnancy
  • Plan B will not abort the fetus if someone is pregnant
  • Time frame differences
  • Denial of Plan B can lead to forcing considerations of abortion
  • The Catholic Health Association has conceded that a patient and a provider can follow catholic teachings while using Plan B provided they aim only to prevent conception.
• Pharmacist’s’ Discretion
  • Cantor and Baum provide three arguments in favor of the view that pharmacists should have the prerogative to refuse to Plan B.
    • Morals of the provider’s shouldn’t be compromised as conditions of employment
• This is more nuanced than this. A lawyer may have to represent a client they dislike. A schoolteacher cannot openly share religious or political views. But you cannot force someone to act against their morals in ways that affect them directly – but morals cannot be imposed on others.
• Democratic refusal / Personal Choice
• Pharmacist’s can and should exercise independent judgment
• Cantor and Baum’s – Patient’s Rights – Ability to demand Plan B
  • The pharmacist’s choices can greatly impact the health and wellbeing on the patient. Consequences.
    • Consciousness objection becomes invasive
  • Abuse of power and discrimination against patients by the pharmacist’s
    • Slippery slope is possible here, be careful
• Ex. Heap of sand analogy
• Take away a grain of sand, you still have a heap
• How many grains of sand until it’s no longer a heap?
• Where do we draw the line?
• Pharmacist’s choose this profession – are bound by certain duties of the job
• Emergency contraception is not an abortifacient
• Find the exception, prove the claim false
• The Options
  • We can recognize that pharmacists have an unlimited right to refuse to refuse to  provide Plan B
  • We can deny that pharmacists have any right to refuse to provide Plan B.
  • We can recognize that pharmacists have a limited right to refuse to provide Plan B. This raises further questions. What are the appropriate limitations on this right?
    • Options:
      • Always have a staff member willing to provide plan B
      • A referral system
      • Make Plan B from over the counter to on the shelf not prescription everywhere
        • Over-the-counter: 
      • Make Plan B available through PCP
    • Bad options:
      • Give the pharmacist’s the patient’s medical history
      • Have like-minded pharmacist’s practice in like-minded physician
• Against Options 1 and 2
  • “An absolute right to consciousness objection respects the autonomy of pharmacists but diminishes their professional obligation to serve patients.”
  • “Complete restriction of a right to consciousness objection is also problematic.”
• Goering – POSTNATAL REPRODUCTIVE AUTONOMY: PROMOTING RELATIONAL AUTONOMY AND SELF-TRUST IN NEW PARENTS
  • Which choices belong to the patient?
  • How should the patient make these choices?
  • How can the medical practitioner help the patient to make these choices autonomously?
  • New parents may have their capacity for autonomy compromised by new stressors.
  • Two models:
    • The french model
• Paternalistic
• “Physician’s aim to promote the best interest of the infant, losing interest in the parents’ wishes.”
• The American model
  • “…parent are generally viewed as the best decision-makers for their infants. In theory, parents are offered relevant information in a non-directive manner”
• Relational approaches have become extraordinarily prominent in recent bioethical scholarship. These approaches “recognize that the influence of some intimates can present obstacles to autonomy”
• Autonomous = self-governing
• Goering adds further requirements on autonomy:
  • Self-trust
  • Self-understanding
  • Self-direction
  • Self-worth
• How does Goering define trust?
• P.14
• “vulnerability to the other in respect to something one cares about, without any specific contract about what is owed. Some of the features of interpersonal trust translate well to self-trust, but not all of them. As with interpersonal trust, an individual who trusts herself must be optimistic about her domain specific competence.”
  • Moral vs reliance
  • Contract – reliance
  • Broken trust – betrayal
  • Broken reliance – annoyance/upset
  • Emotional difference / replaceability / time invested
  • How high are the stakes?
  • Trust has to be tied to moral integrity and personal motivation
  • Trust is relying on someone to care for something one values, on the basis of their good will.
  • Were optimistic that we won’t let ourselves down
  • Moral capacity = natural instincts
  • Postnatal contexts
    • Exhaustion and stress
    • Conflicting advice
    • Postpartum depression
    • Stereotypes
  • The double-bind
• Martin and Goering are worried about the same problems in different contexts. Martin essentially is arguing against something like the French model with respect to PAS.
• Goering wants a model between the French and American models.
• So what positive steps can practitioners take?
  • How can practitioners encourage their patients to trust them?
    • Taking an active interests in patients concerns
    • Demonstrating sensitivity to patients needs
    • Accessibility
    • Shared deniability
• Share the burden of justification
• Pg. 17 left bottom
• Recognizing self-distrust
  • Trusting oneself comes from seeing how other people trust
• Little pt. 2
  • The choice to terminate a pregnancy lies with the mother
  • Morality and intimate duties
    • The beneficence approach is a false approach to abortion
    • Intimacy – motherhood vs kindness
• Little argues the beneficence approach obscures “ the qualitative differences between gestating and giving money to Oxfam…or soldierly heroism…”
• “The ethics of parenthood”
  • It is a legal status
  • Moral parenthood vs legal parenthood
• What morally flows from our relationships once we enter them?
• When should we enter these relationships?
  • Biological connections “provide children with a moral claim that the person so related be open toward developing a deeper relationship”
  • Thin vs thick sense of parenthood
    • How the mother conceives of her relationship with the fetuses
    • “For purposes of the woman’s integrity, her conception is determinative.”
    • Little is not claiming that the woman gets to decide whether the fetus is a person or not.
    • “The only claim about the woman’s conception is that it’s the only thing we have, other than mere biology, to tell whether there is a personal relationship extant and what its textures are like. We might say that her conception is largely determinative of what the relationship is, and that her moral responsibilities follow its suit; or – better, I think – we may simply say that there is too little going on for there to be a fact of the matter of what responsibilities are objectively owed.”
    • Cullen and Klein –
• Honesty – Some Challenging Questions
• Same basic approach as Goldman
  • Patient autonomy
• Dr. Lambert and Susan Cruz
• Underlying assumption that deception is always wrong
• Cullen and Klein
  • People are agents of their own choices, deception undermines that agency
  • Honesty isn’t always the best policy?
    • What if the patient explicitly asks not to be told the truth?
• If the disease is contagious?
• Vertical contagion
  • A disease you can pass onto your children
    • Ie. Huntington’s
  • Is it permissible to not know if you have Huntington’s if you plan to have kids?
    • Embryo screening
    • Testing children
  • Doctor might tell the parent the diagnoses but cannot face testing.
  • Movie: Gattaca
    • Screening for genetic disorders / forcing screening is a slippery slope
    • Disability rights
• Health as a Theoretical concept
  • What kind of question is Boorse trying to answer? Why? Why should we care?
  • How does he go about answering this question?
  • What are his conclusions?
• The Goals of Philosophy – 
  • what question is Boorse answering?
    • Independent definitions of health and disease not defined by each other
    • What is disease?
  • What is disease?
    • Does mental health qualify?
    • The problem of values
    • The influence of values on health judgments has usually seemed most potent in the area of mental health. This is one reason why so much work on the topic is by psychiatrists and psychologists and tends to ignore physical counterparts to the issues it discusses. By contrast with somatic medicine, it is felt, ordinary mental-health practice involves very controversial value commitments, which surface when one deals with any of a whole spectrum of social causes celebres from criminal insanity to homosexuality and feminism. But this”problem of values” is only one aspect of a special pressure on mental-health professionals to deal with foundational 
      • Pg. 543
    • To be healthy is to enjoy a desirable physical condition.
    • Normal is not a defined term.
    • Mental illness changes with society
      • Homosexuality was once a mental illness
    • Value judgements
    • Bear in mind a qualification that Boorse makes before he offer his positive proposal: He uses the term “disease” to pick out a very broad class of conditions, including injuries.
      • Disease as impaired functions
      • Undesirable for the human body
      • Unnatural state of the body
      • Disease in anything that compromises health
    • Departs from natural uses – AMA nomenclature
    • Think about Shwartz – what treatments are doctors obligated to provide.
• How does Boorse approach this questions – The methods of philosophy
  • How can we use the scientific method to answer this question?
  • Statistical non normality
    • Not necessarily disease
    • Boorse method is called philosophical analysis
      • Provide definition of what is being analyzed
      • Come up with examples that challenge this definition with counterexamples
      • Come up with a case in h=which you have invested a lot in someone, and yet it would be weird to say you trust them.
• 1 – disease as the undesirable
  • Being short is undesirable but not a disease
  • Disease can be desirable – ie. cowpox instead of smallpox
• General definition of disease
  • Anything contrary to health
  • To be healthy is to enjoy a desirable physical condition.
  • Conversely, to be diseased is to suffer an undesirable physical condition.
• Counter examples
  • An undesirable physical condition that is not a disease:
    • Being short
    • Being pregnant
    • Broken arm
  • Diseases that could be desirable
    • Sickle-cell anemia (to prevent malaria)
    • Myopia (to escape the draft)
    • cowpox
  • These counterexamples can be categorized as false positives or false negative
  • Diseases are “undesirable conditions that are treated by doctors”
    • False positive – plastic surgery
    • False negative – anorexia
• A condition that is untreatable: sepsis etc.
• Statistical normality
  • Fall within a range close to the mean
  • Counterexample
    • False Negative 
• Heart murmur – statically normal but still a disease
• DS – 1 in 1000 live births
• False Positive
  • Type O blood
  • Red hair
• Disease as pain, suffering, discomfort
  • False positives
    • Cramps
    • Pregnancy / childbirth
  • False negatives
    • Asymptomatic diseases
    • Distinguish diseases from symptoms
    • Disease where you cant feel pain
• Disability
  • When Boorse writes “disability” he has in mind none of the complex social and political ramifications of disability in our sense. This would be offensive today.
  • He means “inability” 
  • Disease constraints ability
    • False positive
      • Fatigue
      • Pregnancy
      • Aging
      • Being unable to swim
    • False negative
      •  
• Relate disease to homeostasis and adaptability
• Positive Analysis
  • “Such a concept of health and disease rests on a teleologically conceived biology. All parts of the body are built and function so as to allow man to lead a good life” – Galen
  • Teleology – 

Possible definitions of disease

• Undesirability
• Medical treatment
• Statistical normality
• Pain, suffering and discomfort
• Inability
• Teleology – systems of parts and each part has a goal
• Galen’s approach conceives of every animal as naturally oriented toward a goal – that is, toward his own “proper goal”. This is part of a wider teleological view of the whole cosmos.
• P.555 “In my view, the basic notion of a function is a contribution to a goal”
• Cells -> organs -> systems -> Body
• The Apex of the Hierarchy
  • So…what is at the apex of the hierarchy?
  • “Contributions to individual survival and reproduction”
  • This might be a bad starting point.
  • How do we determine normal function of any particular organ or processes?
  • Species, age, sex etc.
  • “The species design that emerges is an empirical ideal…serves as the basis for health judgements in any particular in any species where we make such judgements.”
  • Statically non-normal rate below normal efficiency is a disease
• Boorse’s positive analysis
  • The reference class is a natural class of organisms of uniform functional design; specifically an age group of a sex of a species
  • The normal function of a part or process within members of the reference class is a statistically typical contribution by it to their individual survival and reproduction.
  • Health in a member of the reference class is normal functional ability the readiness of each internal part to perform all its normal functions on typical occasions with at least typical efficiency.
  • A disease is a type of internal state which impairs health, ie. reduces one or more functional abilities below typical efficiency.
• Successes
  • “…a man unable to lift a heavy weight may either be a normal individual or a strong man with Addison’s disease.”
  • How does Boorse’s account draw this distinction?
    • Individual potential 
    • you can look at individual pieces not only the big picture – zero in on the problem
• Boorse claims that his view helps to explain why the application of the concept of disease “by veterinarians to commercial animals does not simply reflect commercial interests.”
• Boorse’s positive analysis has four parts (p.555, p.562)
  • The reference class is a natural class of organisms of uniform functional design; specifically an age group of a sex of a species
  • The normal function of a part or process within members of the reference class is a statistically typical contribution by it to their individual survival and reproduction.
  • Health in a member of the reference class is normal functional ability the readiness of each internal part to perform all its normal functions on typical occasions with at least typical efficiency.
  • A disease is a type of internal state which impairs health, ie. reduces one or more functional abilities below typical efficiency.
• Boorse claims that his view helps to explain why the application of the concept of disease “by veterinarians to commercial animals does not simply reflect commercial interests.”
  • What condition does the animal need to be in for us to make a profit?
  • Disease which isn’t a disease
  • Animal interests vs commercial interests
  • Biological vs economic 
• Connections between disease and:
  • Undesirability
    • It is our goal to function correctly
  • Medical treatment
  • Statistical normality
  • Pain, suffering, and discomfort
    • If you are functioning normally you typically won’t be in pain
    • Pain is an indicator that something is not functioning properly
  • Inability
• Boorse’s view does not classify as diseases things like or minor deformities of the nose or ear. But AMA nomenclature does.
  • At least at the time Boorse wrote this
• When you get a counterexample there are a couple of things you can do:
  • You can abandon your current view / revise your definition
  • Or question the counterexample
• “One might wonder why these structural disorders cannot be handled by making the whole disease concept structural rather than functional. Certainty physicians
• Disease is abnormal structure (which typically affects function)
• “…such an account would count superior as well as inferior functioning as disease, since structural abnormality occurs in one as much as htw other.”
• Another anomaly comes, not from the Nomenclature, but from common sense: universal diseases. What are these?
  • Disease common to a large portion of the reference class
  • Lung irritation due to pollution or arterial thickening after a certain age
  • He suggests revising definition
• Rework the definition of disease to include normal environment and environmental disease
• Redefine reference class to include historical baseline

Medicalization

• “Medicalization is minimally…some medical conditions are granted a disease label”
• Reiheld
• What things does Reiheld count as a medical condition that Boorse does classify as a disease?
  • Pregnancy
  • Autism
  • Diseases are medical conditions; not all medical conditions are diseases
• Medicalization
• Reiheld
• Treatment by physicians
  • Not all medical conditions are diseases
  • Not all diseases can be treated/cured by physicians
  • That does not mean that anything that is appropriate object of medical attention is a disease.
  • If something is a disease, then it is the appropriate object of medical ethics.
• Medicalization has moral ramifications and effects on power in society
• Reinforcing Social Hierarchies
  • Peter Conrad – “the illegitimate extensions of medical provenance over human conditions”
  • Four concerns:
    • Expert control. Ex. childbirth
    • Medical /social control – controlling deviant behavior
• Alan Turing
• Homophobia
• “Allows certain things to be done that would not otherwise be considered”
• The individualization of social problems
  • Not all health issues are treated by singular doctor/patient relationships
  • Racial and socio-economic factors
  • Poor people have less access to proper nutrition
  • Treats symptoms not the root of the disease
  • Food deserts
  • Genetic explanations for health disparities across races
  • Accessibility: ramps, elevators
• The de-politicalization of deviant behavior
  • Enemies of the state/political dissenters labeled as mentally ill
• Discredit of illegitimate options
• Woman as overly emotional
• Depression / dysthymia
• Overdiagnosis of ADD/ADHD
• By bringing more and more parts of our lives under expert control
• By legitimizing invasions of people’s bodies
• By individualizing social problems
• By depoliticizing deviant behavior
• Reiheld gives a 5th: to reify the social hierarchy
  • The way things are / have always been / must be
• Dysesthesia aethiposis
  • Equation of difference as wrong or unnatural
  • Reification
• Reiheld focuses on the concept of race
• Learning to see race as social rather than biological
• Samuel Cartwright construction of dysesthesia aethiopis was one step pf the forgetting process
• Four ways in which medicalization can reinforce social hierarchies:
  • By bringing more and more parts of our lives under expert control
  • By legitimizing invasions of people’s bodies
  • By individualizing social problems
  • By depoliticizing deviant behavior
• Reiheld adds a fifth possibility: medicalization can help reify social hierarchies
• Not all medical conditions are a disease:
  • Seperate symptoms from disease itself
    • Infertility or jaundice
• Biological vs practical definitions of disease
• Disease = medicalized condition that is or should be treated
• medicalization can help reify social hierarchies: to make something or equate something as a fact of nature rather than a social construct
  • Ex. money, race
• Dyesthesia aethiopis
  • Reiheld focuses on the concept of race
  • Oxford Reference: A mental disorder supposedly peculiar to black slaves and endemic among them in North America in the mid nineteenth century, manifested by laziness and insensibility to pain when whipped. The article in which it was first reported is often cited as a fanciful example of psychologism. US dysesthesia aethiopis. Compare drapetomania. [Coined by the US physician Samuel Adolphus Cartwright (1793–1863) in the New Orleans Medical and Surgical Journal in 1851, from Aethiopan archaic word for a black person]
  •  
• Race is not a biological concept, it serves to distribute power.
• Some of these cases are significantly different from the others.
  • Pregnancy
  • Same sex marriage
  • Nutritional inequality
  • Political dissent
  • Dyaesthesia aethiopis
• Medical conditions?
  • Depression – clinical vs grief related depression
    • Effects no less real either way, whether or not depression is a medical conditions
  • Symptoms =/ disease
• Dyesthesia aethiopis
  • Symptoms: imbalance of humors, fatigue, intellectual degradation
• Another example of reification
  • Intersex
    • Atypical genital presentations associate with conditions that do constitute genuine threats to a child’s health, including genital adrenal hyperplasia (GAH)
    • But the gender presentation does not cause these threats, and yet this presentation was (and to some extent still is) treated as a medical condition. The standard of care was, and in many cases still is, surgical intervention in order to achieve :normal” genital presentations.
    • Reification of sex and gender “matching” and the gender binary
    • Biological concept of only two sexes (XX or XY, ignores XXY, X, XXX, and other forms of intersex and hermaphrodite congenital conditions)
    • Reifies that anything other than XX or XY must be “fixed” even if not a health threat, rather than being left up to the child to present as they choose to when older.
• Autism: Gaining Access
  • Think about the right to an education. Respecting this right means providing reasonable accommodation to those who need assistance – but what counts as reasonable accommodation depends, in part, on what gets medicalized.
    • Ex. ADHD – diagnosed children would get extended time, children with similar behavior but not diagnosed will not get these accommodations
    • Medicine is highly business and profit oriented
    • Medicalization can exacerbate profit seeking (ie. price of epipens, cost of AZT, insurance, continuous testing of mental diagnoses of ADHD etc.)
  • There are social benefits to medicalization, too.
    • “Grinker…describes an incident when Isabel acted out in public at the grocery store when she was older, after autism had begun to be widely publicized as a disorder.” (82)
    • Some think autism should not be medicalized as it is not something that should be corrected.
• It does however require interventions, accommodations, therapy, awareness, etc.
• It is a different mental and social capacity
• HIV/AIDS: Destigmatization
  • Reiheld suggests that the persistent stigmatization of people with HIV/AIDS across the globe represents that insufficient medicalization of the condition.
  • Sufficient medicalization is destigmatization
• The Triad
  • Medicalization has three aspects
  • Illness is the patient’s experience of their condition
  • Sickness is society’s perception of the condition
  • Disease is the medical profession’s judgement
• Example: Alcoholism
  • “If physician’s perceive alcoholism to be a disease but society perceives it to be a vice or character flaw…and the patient perceives herself to be coping…only one of the three spheres is filled in”
  •  
• HIV/AIDS: Destigmatization
  • The medical community perceives HIV as a disease
  • Socially seen as punishment for immoral behaviors
• Sufficient medicalization is destigmatization
• A clarification 
  • Distinguish two kinds of claims
    • There is a biological explanation for X
    • X is a medical condition
  • Claim b is a practical claim. It is a claim about what we should do about the condition in question.
  • Health is a practical concept
• Ways medicalization destabilizes social hierarchies
  • Access to social resources and opportunities
  • Destigmatize condition
  • Affirm sense of reality
  • Mitigate the burdens of oppression
• Chronic Fatigue Syndrome
  • Suffer experience shame stemming from “not from being told they had an illness, but from being told they do not. Their shame is the shame of being wrong about the nature of reality.”
• Mitigate burdens of oppression
  • Depression
    • Cannot fight oppression when you can’t get out of bed
• Some medical conditions are exacerbated by environment/social context
• Other possibility to how medicalization cn reinforce social inequalities:
  • Insulating the powerful from moral accountability
    • Poor treatment of dementia patients
    • CEOs of oil / pollution a medical rather than political responsibility
    • Affluenza (an insanity plea for the rich)
• Boys will be boys mentality
• Nelson – Making sense of queer lives
  • Medicalization of queer identities
  • How does medicalization destigmatize queer identities?
    • Negates supposed depravity
    • Shift from moralized language to medicalized language
• Nelson – is a trans author
• Making Sense of Queer Lives – Nelson
• Advancements of medical conception to destigmatize
• The Limits of destigmatization
  • We might think that medical conditions ought not carry stigma – but unfortunately they do
    • “Medicine’s imprimatur hasn’t uniformly insulated those who are ill against opprobrium and loss of opportunity”
    • Especially mental illness
  • Implies this is something that needs to be cured or corrected
  • Reiheld p.82 And Autism
• Access to Resources
• To label something a disease is to imply it is appropriate object of medical attention.
• Certain kinds of medicalization can help trans men and woman gain access to resources they might need as they transition, including gender confirmation surgery.
  • Dysmorphia is common though not the only factors/possibilities
• Insurance companies should be obligated to cover this procedure.
• What falls under the scoop of medicine.
• Confirming someone’s experience
• Nelson argues that in the past, the medicalization of trans identity has helped to provide at least some conformation of trans experience.
• The Limits of confirmation 
  • Value of medicalisation’ values here are limited, why?
    • Reinforcement of the gender binary
    • One or the other, no inbetween
• Moreover, Nelson argues    that there is actually very little (if anything) that medical science can tell us about what it means to any one person to be queer, in any particular way.
• Although being queer may supervene  on(or correlate with) certain biological facts.
• “Even if there were some invariant physical difference, it couldn’t provide the kind of account that could make sense of the whole phenomenon”
• On these grounds, Nelson argues, we shouldn’t look to medical science to answer question like “why am I attached to people of this gender?” etc.
• “…the proper route for making sense of queer lives is not by digging down deeper into human biology but rather by looking out.” at worlds in which queer lives can be lived “openly, securely, and resonantly.”
• One way to understand Nelson’s discussion is to acknowledge a distinction between gender and sex
  • Gender is social
  • Sex is biological
• Our bodies, ourselves
  • First, that our sense of who we are – the kinds of things that interest Nelson here – can affect our relationships with our own bodies.
  • Second, that this in turn should bear on our sense of ourselves and our bodies.
• Boorse’s slogan: “the natural is the normal”
  • Focus on biological functioning
  • Statistical normality
• Feder
• In medical discussions of intersexuality, children “appear not so much as children but as discrete body parts’ such representations resist association with living children.
• This leads to misunderstanding their medical concerns.
• Feder provides case studies, some issues involve research ethics
• Habitus
  • “Playing by ‘the rules’ of habitus…does not entail an intention to follow the rules and does not require understanding our conscious recognition of the rules.”
    • Cultural unconsciousness
    • Once things are reified, they become a part of the cultural unconscious
• Feder argues that the fact of sexual difference is a part of our habitus
  • Counterexamples to the binary:
    • Sex changing frogs
• “That is not to say there isn’t disagreement where questions of sex and gender are concerned. Indeed, controversy concerning what it means to be a man or a woman…”
• Ruby’s Story
  • Not presented as an option, genital surgery presented as mandatory as heart surgery for a defect
  • P.54 Dependency worker vs provider
  • Ruby is the dependency worker (her daughters depend on her) while the provider provides the dependency worker with what they need
  • “Even as a provider enables a dependency worker to do her work by supplying necessary resources, a provider may also limit the autonomy of that worker by exploiting her dependency to carry out some other agenda, an agenda the provider himself might not even be aware of”
    • What is the agenda?
    • It is not intentional.
• Mary’s Story
  • Mary’s daughter underwent a clitroplasty, after which she felt that “a piece of her was gone”
  • “The doctor…explained to me that this was something I should never, ever bring up with jessica. I should never talk about it with Jessica. We should just take care of it as quickly as possible so that Jessica could live a normal life”
• Habitus at Work
  • Feder argues that there may be a kind of “guilty by association” at work in these kinds of cases: “as one parent of a girl with mixed sex chromosomes remembers asking before her birth, ‘what sort of people would give birth to a hermaphrodite?”
  • Physicians reinforce this concern by implicitly challenging parents: “what sort of parents would subject their child to life as a hermaphrodite?”
  • “If doctors were to use their considerable authority to promote acceptance of genital variation instead of erasure the prevailing habitius would shift”
  • In what ways can we understand Boorse through the lens of Feder:
    • For the reference class, more than two sexes, a spectrum
• (XX, XY, XXX, X, XXY)
• Atypical genital presentations may be the cause of a disease or be linked to a disease but are not a disease themselves
•  

Disability

• Ability and representation
• Scully
• “Research and medical ethics…pay particular attention to individuals or groups they describe as vulnerable…in research ethics, for instance, vulnerability is often about being subject to exploitation by the research enterprise.”
• Vulnerabilities
  • Limitations to our cognitive capacities
  • Power differentials
    • Physician’s authority
    • financials
  • Broadly based social inequalities
• A Central Ambiguity
  • What does Scully mean by “vulnerability”? Scully distinguishes two ways in which we might talk about it:
  • Is it a universal feature of all human lives?
    • Environment
    • Fatigue
    • Sickness
    • Death
  • Is it something that is experienced more in some lives and not much in others?
  • Focusing on the second sense of “vulernatibi;ity” Scully defines special vulnerability: it involves a “greater chance than others of being subject to harms”
  • Specific vulnerability is vulnerability to certain things or in certain ways
  • Ex. Psych students are vulnerable to being pressured into research/power differentials/exploitation
  • Ex. Infants are vulnerable to everything
  • Who is vulnerable – 
    • Difference between ontological (everyone) and special (specific people/groups)
  • Vulnerable to/which harms – 
    • Difference between global (all things) or specific things
  • A Dilemma
    • “Concentrating on the generality of vulnerability may district from identifying with empirical rigour the particular conditions that make some people more vulnerable to harms than others, and this in turn makes it harder to do anything to change those particular conditions for the better. On the other hand, concentrating only on the special vulnerabilities of defined groups reinforces the notion that although some people need special protections the norm of human life is to be, or aspire to be, invulnerable.”
  • Autonomy and Vulnerability
    • “Disabled people are among those commonly  held to be specially vulnerable. Research ethics approval procedures, for example, frequently designed so that the involvement of disabled people triggers extra ethical secruinity or requires the researchers to give stronger than usual justification for using disabled participants.”
  • Keah Brown
    • Inspiration Porn
• Offering unwanted help
• Belittling intelligence or autonomy
• Overly praising mundane acts accomplished by disabled people (typically visibly disabled)
• https://www.nationaleatingdisorders.org/blog/respect-my-disabled-body
• Scully wants to complicate our approach in part by distinguishing various connections between disability and vulnerability. Not all of these connections are alike.
  • Inherent vulnerabilities
    • A result of the disability/condition itself
  • Contingent vulnerabilities
    • Disability combined with social expectations/treatment
• “The proportion of vulnerabilities that are purely inherent – where there is no social or environmental component contributing to the vulnerability – is probably much lower than traditional views of disability suggests”
  • Ex. down syndrome and early intervention therapies
• On “the strong social model” disability is “the product of a particular social response to embodied difference and not…an individual pathology”
  • Ex. Autism as a different way of life not a developmental disorder
• Scully doesn’t fully embrace the strong social model
  • Inherent vulnerabilities exist
• Ascribed global vulnerabilities
  • “The tendency on the [part of the nondisabled to extrapolate a genuine vulnerability in one area of a disabled person’s life…to a globally increased”
• Distinguish
  • Some vulnerabilities make us dependant
  • Vulnerabilities that arise in virtue of our dependence on others
• Scully raises these issues because non-relational approaches to autonomy tend to cast dependence as a threat to autonomy. She wants to critique this framework.
• Scully 
• Disability and Vulnerability
• Who is vulnerable
  • Ontological vulnerability – everyone is vulnerable
  • Special vulnerability – specific group is vulnerability
• Which harms / vulnerable to which harms
  • Specific vulnerability – vulnerable to a specific thing
  • Global vulnerability – vulnerable to everything
• Inherent vulnerability
  • Purely an effect of the disease/disability – biological/physiological
• Contingent vulnerability
  • Caused by society
  • Vulnerable to the actions of others
• Ascribed vulnerability
  • Assumed vulnerability by others
  • Attributing a specific vulnerability as a global vulnerability
• Vulnerability and Dependence
  • Relational approaches
    • Boundaries between the agent and:
• Rebellious aspects of your own psychology (fears, obsessions, anxieties)
• Limitations on your activities
• Other people (including paternalistic physicians and coercive family members)
• The Traditional View
  • “Commonsense dependencies” such as old age, infancy, sickness: “needs for active and obvious care to carry out various functions of daily life..”
  • The standard view of dependence and vulnerability ignores “the way that all of us are dependant on others, even when we are adult, able-bodied, and healthy”
• Inherent vs contingent
  • “If all human lives necessarily involve dependencies, then all lives entail vulnerabilities as well. These are ontological in a different way from the vulnerabilities I described earlier, which come about through the material and biological finitude of the human organism. They are also different from the contingent vulnerabilities generated by structural inequalities.  The vulnerabilities I describe here are not inherent but are generated intersubjectively”
• If dependency and vulnerability are everywhere, then why do particular vulnerabilities “show up” for us in a way that others do not?
• “…we need to ask why some kinds of dependency are perceived as leading to problematic vulnerabilities while other kinds are effectively permitted. Societies permit certain dependencies, the ones that “most”
• “The import point is that what counts as a permitted dependency (and therefore doesn’t show up as exceptional vulnerability” is not “natural,” in the sense of simply following on from the fact of impairment”
• Some vulnerabilities are more visible but all have the same weight
• Scully’s Argument
  • First, we identify the kinds of things we need from our moral vocabulary: we need to be able to acknowledge the different forms that vulnerability and dependence take.
  • However, Scully argues that the distinction we draw between ontological vulnerability and special vulnerability does the job badly: to cast some as “specially vulnerable” overemphasizes difference and obscures similarity.
  • Putting these two things together: “there is a fine balance to be stuck between

Practical Implications

            Screening for disability

• McMahan
• Screening for Disability
• This article has some flaws
• Should pregnant people have the right to terminate a pregnancy on the grounds of the probability of disability?
• McMahan supports allowing termination of pregnancy on the grounds of disability
• Arguments against termination of pregnancy due to disability
  • Such practices have a eugenicist tone 
    • Gattaca
    • Designer babies
    • Slavery / holocaust
    • Forced tube tying
    • Girls less favorable then sons in China
  • Such practices encourage disrespect for people with disabilities, and diminish their political power
    • Denying personhood
  • Such practices diminish human diversity, and deprive the nondisabled of important learning opportunities
    • Problematic – bear the burden of educating on disability
• Focus on the usefulness to able people
• Similar to inspiration porn / idolizing or fetishizing raising disabled babies similar to the mixed race baby craze
• Such practices express disrespect for people with disability
• Case: “might be rather nice to have a child who might be more dependant than child usually are.”
  • Any noise
    • Issues about sex / woman’s pleasure
    • Seeking to cause disability vs natural disability
    • Blame woman for disability in children
    • Fetishizing of disability (how we get cases like Mommy Dead and Dearest – forcing disability on a non disabled child)
  • If we can choose to have a healthy child we should be able to choose to have a sick child
  • Creepy
• Pg. 131
• Disability rights advocates argue that there is nothing wrong  with disability it is an aspect of human diversity.
• If this were true then there would be nothing wrong with causing a non-disabled person to sustain a disability.
• But there is. So disability must be bad.
• McMahan acknowledges this fails. Why?
  • Transition costs of becoming disabled
  • Violation of autonomy
  • Society makes disability challenging even if it isn’t essentially bad
• Above Case
  • No transition costs and fetuses have no autonomy
  • Still objectionable in the neonatal context
• “The crucial premise here is that if it would be morally objectionable to try to prevent a certain outcome, and permissible to deprive people of he means of preventing that outcome, then it ought to be permissible to cause that outcome, provided one does so by otherwise permissible means.”
• Cause vs prevent
• If it’s permissible to object to terminating a disabled pregnancy, it is permissible to cause a disabled pregnancy.
• McMahan
• P.131 Argument
• It is impermissible to cause a non disabled person to sustain a disability
  • It is worse to be disabled than non disabled
  • There are transition costs associated with a new disability
  • Violates autonomy
• Disability rights advocates often call thus claim into question.
• If you can’t prevent something it okay to cause it (bad case about the woman wanting a disabled child) If you cannot terminate a disabled pregnancy, you can cause one
• If it’s wrong to cause something, it’s okay to prevent that thing (if it’s wrong to cause disability, it okay to prevent it – terminate pregnancy)
• However, it can be wrong to cause something an wrong to prevent it
  • You can’t make your friend date someone, but can’t stop them either
• If its not okay to cause a disabled child to be born rather than a nondisabled child, then it is okay prevent a disabled child from being born.
• So it is not morally objectionable to try to prevent the birth of a disabled child.
• Barnes
• The mere difference view vs the bad difference view
• “It is perfectly consistent with the mere difference view that the actual well-being of disabled people is, on average, lower than that of nondisabled people, simply because of how society treats disabled people.”
  • Down Syndrome today vs 60 years ago
• In contrast, the bad difference view holds
• “Not only is having a disability bad for you, having a disability would be bad for you, even if society was fully accomading”
• Barnes acknowledges that particular disabilities may involve the loss of access to good things.
• MacMahn – argues in favor for disability screening and allowing termination of pregnancy on the basis of disability
  • The crucial premise
• It is not morally objectionable to try to prevent the birth of a disabled child
• Barnes
  • The mere difference view
• Barnes
• The mere difference view vs the bad difference view
• “It is perfectly consistent with the mere difference view that the actual well-being of disabled people is, on average, lower than that of nondisabled people, simply because of how society treats disabled people.”
  • Down Syndrome today vs 60 years ago
  • Use Scully’s idea of contingent vulnerabilities
• In contrast, the bad difference view holds
• “Not only is having a disability bad for you, having a disability would be bad for you, even if society was fully accomading”
  • Ableist
• Barnes acknowledges that particular disabilities may involve the loss of access to good things.
• However some disabilities might bring positive differences as well
  • Deaf people have a different experience of language, etc.
• The nature of wellbeing
  • In arguing the mere difference view, Barnes faces an odd challenge. People disagree about the nature of well-being
  • Subjective views
    • What it means to live a good life is dependency on a person’s subjective desires. If you want to spend your life counting blades of grass? Whatever makes you happy dude.
  • Objective views
    • Some things are necessary for a good life, whether you desire them or not. No interest in art (for example)? You can feel pretty good about your life, but its still missing something.
  • Subjective views are increasing popular
• The Bad Difference view
  • Given these competing conceptions of a good life. Barnes characterizes three ways of thinking about the bad difference view.
    • 1- Disability is something that is an automatic or intrinsic cost to your well being.
  • This version of the bad difference view assumes an objective conception of wellbeing. We might think, for instance, that the auditory experience of good music is an essential component in any good life, one that deaf people cannot enjoy.
  • Of course a lot of people reject the objective conception of well-being.
    • 2- Were a society fully accepting of disabled people, it would still be case that for any given disabled person x and any arbitrarily nondisabled person y, such that x and y are in relevantly similar personal and socioeconomic circumstances, it is likely that y has a higher level of wellbeing than x.
    • 3- For any arbitrary disabled person x, if you could hold x’s personal nd socio economic circumstances fixed, and remove the disability, their life would improve.
• Implies an imperfect life might to be worth anything
• Barnes rejects all three claims. Instead, she argues in favor of another approach to disability, which typically involves a commitment in some combination of the following four claims.
  • Disability is analogous to features like sexuality, gender, ethnicity, and race
  • Disability is not a defect or departure from normal functioning
    • Can become their own reference class
    • Congenital is natural; developed disability is injury not disability
  • Disability is a valuable part of human diversity that sh9uld be celebrated and preserved.
  • A principle source of the bad effects of disability is society’s treatment of disabled people, rather than disability itself.
• The no-causation argument
  • Barnes points outs that Machan’s argument relies on a conditional claim
    • 1- if disability constitutes mere difference rather than bsd difference…then it would be permissible to cause disability
    • 2- it is not permissible to cause disability (mcmahon claims)
    • If 1 and 2 are true, then disability cannot constitute mere difference.
  • You can reject the premises, so the conclusion is false,
  • Or, even if the premises are true, the conclusion doesn’t follow
• Disability is not a defect or departure from normal functioning
  • “I want to understand disability as a term introduced by ostentation. Think of paradigm causes of disability – mobility impairments, blindness, deafness, rheumatoid arthritis etc.
  • “What follows…if these things are mere differences rather than bad differences”
• “To make this point, i consider other features which we standardly consider…”
• It is permissible to allow something, but not to cause it
• Case: light show
  • Problem – transition costs
• Case: reverse light show
  • Violation of autonomy
• Transition costs can vary by person to person
• NO transitions costs
  • How does disabled baby work?
  • Barnes assumes cara wrongs daisy by causing her to be disabled, even though daisy will bear no transition costs.
  • Does this mean that we need to appeal to the bad differnce view of disability to explain the fact that cara wrongs daisy.
  • How does Baby Genes work?
  • There is a mere difference but causing a difference is wrong
• Identity and interference
  • We face questions about what fals into the cores of our identities and what falls into our peripheries
  • With baby genes, barnes prompts in us the “gut reaction” that we shouldn’t interfere with our children’s core identities even if the interference at the periphery is fine.
• Barnes proceeds to clarify the argument
• How does “Reverse Disabled Baby” work? What is it supposed to show?
  • Two possible responses
  • 1 – we could try to argue that there are greater risks associated with growing up disabled than non disabled – including risks growing up regretting one’s own condition
  • 2 – We could reject this common sense intuition about this case
    • Ableism to assume disabled is worse than non disabled, that nondisabled is safer
• “Our intuitions aren’t a particularly good guide to thinking about disability”
• “Everyone is constrained by the way their bodies work…it is simply that being non disabled constraints options in a way that we’re more comfortable and familiar with.”
• No interference
  • So we’ve seen cases that involve interference but no transition costs. Now consider a case that involves no interference either.
• Barnes’ response to MacMahn
• Just because it is wrong to interfere, does not mean it is right to cause
• Consider a deaf couple, interested in having a deaf child in order to share experiences, culture, and traditions with him. My gut reactions to this kind of case, at least, are far less clear than they are on the kind of case that MacMahn gives.
• McMahn leverages his gut reaction that it is impermissible to cause disability as a way of arguing that disability is not mere difference but is bad difference.
• But notice, many disability rights activists and writers claims the following:
• 1- it is impermissible to cause non disability (through prenatal screening or treatment without consent)
• However these same activists and writers presumably also hold the following
• 2 – there is nothing inherently bad about non disability
• In other words they take a mere difference view of non disability and yet claim that there is nothing wrong with non disability
• As we engage in moral thinking, follow these four steps
  • Look out into the world at te kinds of discrimination that prevail our communities
  • Recognize that we all may to some extent internalize the oppressive concepts that give rise to discrimination
  • Try to suspend your own “gut reactions” on cases related to these forms of discrimination
  • Learn from those who experience this discrimination. how do they understand themselves and the wrongs done to them?
  • The “cure”
  • Barnes ends with a discussion of the search for “cures”
  • What is her take on these research projects?
  • She sees the option as good, but we shouldn’t cast it as a cure
  • The option could be harmful (Vellemen)

Research Ethics

• Physician and Scientist
• Hellman and Hellman
• Polemic – controversial opinion
• Define relationships
  • Patient and physician
  • Researcher and test subject
• Researcher cannot provide the care of a patient that a physician can provide
• Kantianism and Utilitarianism
  • A moral theory gives foundational rules for why the right thing to do is the right thing to do
  • Kantianism: Human beings are bearers of dignities; shouldn’t be treated as means to an end, but a end to themselves
  • You can never justify using people
  • Utilitarianism: The greatest good for the greatest number; ends justify the means; needs of the many outweigh the needs of the one/few
    • Ex. of the issue with Ut. –  4 sick people and 1 healthy person. Kill one healthy person to save/give organs to four people
• In Hellman and Hellman’s interpretation, the physician is (implicitly) a kantian, and the research scientist is (implicitly) a utilitarian. 
• Morally fraught experiments:
  • Tuskegee Incident/Experiment
    • How was it justified?
• How, in particular does “the randomized clinical trial routinely [ask] physicians to sacrifice the interests of their particularly patients for the sake of the study and that of the information that it will make available for the benefit of society.”?
• The issue turns on the ethics of the placebo
• What is the placebo, and what role does it play in medical research?
• Hellman and Hellman allow that a placebo is appropriate in very specific circumstances
  • The physician must be in a state of equipoise
  • Risks on either side must be equal
• However, Hellman and Hellman deny that physicians are in true equipoise very often
• “…it may not be true, in fact, that the not-yet-validated beliefs of physicians are as likely to be wrong as right. The greater certainty obtained with a randomized clinical trial is beneficial, but hat does not mean that a lesser degree is without value.”
• Where might physicians get evidence from, if not from randomized trials?
• If hellman and hellman are right, then physicians may not, as physicians recommend patients undergo a trial.
• Could patients waive their rights? That is, could patients opt out of the physician-patient relationship, and into the researcher subject relationship?
• “…patients are extremely dependant on both their physicians and the healthcare system. Aware of this dependence, physicians must not ask for consent, for in such cases the very asking breeches the doctor-patient relationship. Anxious to please their physicians, patients may have difficulty refusing to participate in the trial the physicians describe.”
• Appelbaum et al are interested in the same kinds of concerns that worry Hellman and Hellman. They write
• “…comparisons of multiple treatment methods are legitimately undertaken only when the superiority of one over the other is unknown; thus the physician treating a patient in one of these trials does not abandon the patient’s personal care, but merely allows chance to determine the assignment of treatments, each of which is likely to meet the patient’s needs.”
• Appelbaum also doubts physicians are in true equipoise very often
• The tensions between research and care
  • What are protocols and why are Appelbaum et al worried about them
  • Exclusion of adjunctive medications or forms of therapy
• The therapeutic misconception
  • Fundamentally, appelbaum et al are interest in another question that we raised on friday: can patients waive their rights to ‘personal care” voluntarily opt out of the practitioner-patient relationship and into the researcher-test subject relationship
  • They are worried about physicians’ willingness to pursue – and patients competence to give – informed consent.
  • In what ways did patients tend to misunderstand the research protocols they were signing up for?
  • It’s not just patient’s misunderstanding, it might also be the way the research itself is presented to them.
• Perverse Incentives
  • Carrot or stick
  • Reward of punishment
  • Perverse incentives arise when we design our institutions in ways that reward people for doing things we would rather they not do, and punish people for doing things we would like them to do.
    • Ex. teaching to a standardized test
    • Milgram’s obedience experiment
  • Appelbaum et al worry that, when one person occupies the roles researcher and physician at the same time, she gains a perverse incentive to talk her patients into participation in her research study
  • One response to their article to think’: well i wouldn’t succumb to that temptation
  • Irrationality shows up on  both sides of the practitioner-patient relationship
• Bringing in a neutral party to fix the issues of perverse incentives
• Use neutral 3rd party researchers\

H0w can we manage the tension between the physician’s and the researcher’s perspectives? 

• The central question
• How can we manage the tension between the physician’s and the researcher’s perspectives?
• Equipose
  • Angel: “an essential ethical condition for a randomized clinical trial comparing two treatments for a disease is that there be no good reason for thinking one is better than the other.”
  • There will tend to be some noise, making equipose difficult or impossible
    • Results of previous trials
    • Physician’s familiarity with similar medications or treatments
    • Physician’s familiarity with the patient
    • The physician’s intuition
  • It is largely on these grounds that Hellman and Hellman argue that double-blind studies are impermissible. How might we push back on their conclusion?
  • These kinds of reasons don’t give us a good enough reason for thinking that one treatment is better than another.
• Placebo
  • The declaration of Helsinki: “in research on man [sic], the interest of science and society should never take precedence over considerations related to the wellbeing of the subject,” and “in any medical study, every patient – including those of a control group, if any – should be assured of the best proven diagnostic method”
• Is this best proven method of treatment the best proven in general or the local standard of care.
• Case Study
  • Tuskegee Incident
    • Syphilis
    • Justification: 
• If it wasn’t for the study, they wouldn’t be treated at all anyways – so less than the proven standard of care was okay
• This study was important and a never to be repeated again.
• What are the dangers of adopting a “local standard of care” approach?
  • Moral dangers (unfairly attacking the impoverished)
  • Scientific dangers (biases etc.)
• Two concerns
  • Exploitation
    • Power differentials
    • Using people for your own gain
    • Research into the prevention of vertical transmission of HIV
    • “All except one of the trials employ placebo-treated control groups, despite the fact that zidovudine has already…”
    • Exploitation occurs when one party in a position of power offers to provide another party in a position of vulnerability access to necessary resources – at a significant price.
    • Many aim to justify exploitative practices by arguing that, in the end, it makes everyone better off. (without the study, the participants never would have had access to treatment in the first place.)
    • Intent can be a factor
    • People are entitled to care
  • Perverse incentives
    • Discussing a study on the prevention of tuberculosis in HIV infected adults. ANngell points out that “in the united states it would probably be impossible to carry out such a study, because of long standing official recommendation that HIV-infected persons persons with positive tuberculin skin tests receive prophylaxis against tuberculosis”
    • If we opt for a “local standard of care” model, then researchers will have a scientific and financial interest in maintaining access to populations in which the standard of care is lower than it is in the united states.
    • How might this incentive affect their activities? Why is this incentive perverse?
      • Political motivation to sustain the existence of low resource areas
      • Goal of increasing the standard of care applies to everyone except for those in underprivileged areas – widening the gaps
      • Publish or perish
• Bad Blood by James Jones
• The Tuskegee Study in Detail
  • The researchers involved in the Tuskegee syphilis study did not simply decline to inform them that they had syphilis, or to provide penicillin once that became the standard of care.
  • First, they actively misled the participants, advertising the study as a “last chance for special treatment” There was no special treatment.
  • Second, they actively conspired to prevent the syphilic participants from receiving the standard of care prior to the adoption of penicillin.
  • Third, they did nothing to discourage either the vertical or the horizontal transmission of the disease.
  • And fourth, the study continued for about 40 years.
• Lurie and Wolfe
  • “We believe that…equivalency studies  of alternative antiretroviral regimens will provide even more useful results than placebo-controlled trials, without the deaths of hundreds of newborns that are inevitable if placebo groups are used”
  • Notice that there are two distinct claims
    • That equivalency studies will provide more useful results than placebo controlled trials
    • That equivalency studies are morally preferable to placebo controlled trials
  • Angell argues that once we demonstrate claim (2), claims (1) becomes superfluous.
• Standard of Care
  • Lurie and Wolfe “Some officials and researchers have defenders the use of placebo-controlled studies in developing countries by arguing that the subjects are treatments are treated at least according to the standard of care in these countries, which consists of unproven regimens or no treatment at all…economically determined policy of governments that cannot afford the prices set by drug companies”
  • Essentially, the geographical distinctions at work in the “local standard of care” interpretation of the declaration of helsinki are morally arbitrary at best.
  • Perverse incentive
    • “Such a double standard, which permits”
    • “What are the potential implications of accepting such a double standard”
• Defending Placebo-controls
  • Lurie and wolfe mention a few possible defenses of pacebo coltrooled trials. What are they and which defenses work (according to lurie and wolfe)
• Pushing Back
• Couch and Arras defend the “local standard of care” interpretation of the Declaration of Helsinki
• They raise a lot of different issues
  • What, specifically, do we learn from placebo controlled trials that we would not learn with equiliency studies
  • Does the local standard of care interpretation of the declaration of helsinki ignore the vastly unjust distributions of wealth globally
  • Does the local standard of care argument ignore the incentive to licence trials exploitative research practices
• Two research questions
  • Is shorter AZT at least as effective as full AZT
  • Is shorter azt better than nothing
• How are these questions different?
• Why might we be interesting in the second question?
• If the purpose of the research is to benefit people in developing-countries, then the second question may be more important than the first. Why?
• For another thing, there remains plenty of unanswered question. For stance, “the mother-to-infant”
• The question is, do study 1 (placebo vs full) and study 2 (short vs full azt) occur in the same environment? If not then we may not be able to rely on the placebo-controlled results from study 1 to determine the background transmission rate relevant to study 2.
• Ambiguity in declaration of helsinki
  • Angell observes that does it mean the best known method full stop or best known method available to research participants.
  • In defense of the latter, Couch and Arras
• The claim of entitlement
  • First, Couch and Arras argue that “critics of placebo-controlled AZT studies assume… that all research subjects are morally entitlement to receive the prevailing standard of care in more developed countries”
  • Two ways of vindicating this assumption
    • A general theory of healthcare justice: assuming access to a limited but fair share of resources, which treatment would we choose to undergo? In light of our diverse needs, “spare no cost”
• There is not a fair distribution. What does this say about about healthcare justice in the real world?
• First, we need to reform the global distribution of wealth quite radically, perhaps to (or beyond) the point when the full AZT regimen would be available to everyone.
• “…the citizens of these impoverished countries may indeed…”
• Couch and Arras argue that we need to find solutions that will make concrete differences in people’s lives. Working for systematic reform is important, but so is finding short-term solutions that will improve people’s lives in the meantime.
• “…it might be claimed that researchers have a duty to provide it [the highest standard of care] to them based on their special relationship”
  • This is the argument from Hellman and Hellman. How do Couch and Arras respond?
  • “In any case, “this proposed method of compensation [for subject’s burdens] would have the undesirable effect of preventing researchers from answering the most meaningful questions that motivated the research in the first place.”
  • “Even if subjects do assume additional burdens 
  • “Even if they end up in the placebo group
• Placebo controlled trials do yield important information – and in particular, information that is practically important to the populations within which this research is done.
• Is there a general right to the best healthcare available globally? Yes
• Do researchers have a particular obligation to provide the best care avaib;e globally?
• “Even if subjects do assume additional burdens by participating in a trial, they also become eligible for the important benefits not normally available off study”
• “…even if they end up in the placebo group, they will probably receive better basic medical care”
• In any case, providing the best care globally, “would have the undesirable effect of preventing researchers from answering the most meaningful questions that motivated the research in the first place”
• Does this response get us far enough away from the abuse of the tuskegee study?
• The Specter of exploitation
  • In order to justify iur interest in research quesrion “is shorter AZT better than nothing?” we’ve emphasized the importance of less expensive reigmen for the people in developling countries.
  • If our research does not promise to benefit the people who particpate in the research study, but instead predominetely benefits people in wealthier countries, then our research is exploitative.
  • “…in order to be judged ethical and nonexploitative in the final analysis…research must not only adress local problem, but the results must be made reasonable avaible to local populations.
  • The Main Question: Must researchers offer prior assurances that they will live up to this principle? Of what form?
    • “Reasonable availability” is vague
• Research results should benefit the populations where research is done (the ideal)
• researchers/fund-ers must offers prior assurances that the results will benefit these populations (the strategy)
• What form should “prior assurances” take?
• Drawbacks to precommital strategies
•  

Animals and Research

• What might make invasive research on animals morally wrong?
  • Exploitation
  • Harming the animal
  • Lack of consent
    • Is animal autonomy valuable?
    • Babies get someone to consent on their behalf
  • Standards for research on animals are lower
  • Taken from natural habitat
  • Breed for research
  • Distinguishing between animals
    • Similarity to humans
• “Whether they realize  it or not, most stakeholders in the debate about using animals for research agree on the common goal of seeking an end to research that causes animals harm”
• Two questions
  • Scientific usefulness
    • Rowan and conlee argue that research on primates does not provide much useful information.
    • Zurlo supports this, emphasizing that toxicity in animals imperfectly predicts toxicity in humans,. Why?
    • “There are several major scientific issues with the current toxicity testing approaches: the necessity for high-to-low dose extrapolation, the limitations of genetically homogenous animal strains, and the uncertainty of interspecies comparisons”
    • Does redmond deny this?
• No, but believes there is no viable alternative
• Moral costs
  • In itself, invasive testing (by definition) causes animals harm
  • The ways in which animals are housed for research might be harmful to them…
• Lurking in the background is a third question: Is there a viable alternative to invasive research on animals?
• Zurlo sketches an alternative
  • She acknowledges that it will provide imperfect data – but so do current research standards.