Ethical Decisions Final

Explain the distinction we developed in class between the post hoc perspective and the ex ante perspective. How might this distinction come in to the analysis of certain bioethical issues involving disease or disability? In particular, how might this distinction help us to see the compatibility of certain claims about procreative moral responsibilities or norms, on the one hand, and values such as the moral equality of persons, on the other hand? Which authors were centrally concerned with those issues?

Post Hoc: This is the standpoint after someone with a genetic disease or disability has come into existence. They believe The person has a developed identity, relationships, values, and a sense of self.

They may feel glad to be alive, even with a debilitating condition, Their lived experience is often meaningful, and they might not wish their life circumstances had been different.

Ex Ante: This is the prior viewpoint, held by prospective parents making decisions before a child exists:The focus is on whether it is morally responsible to bring a new person into existence under certain conditions (e.g., high genetic risk).

This perspective does not evaluate an existing person's life, but rather weighs the ethics of creating a person who will predictably suffer or be disadvantaged.

Key Authors:

Kass's critics: Slippery Slope, Genetic abortion (i.e., aborting fetuses with serious genetic defects) will lead us down a slippery slope toward undermining the moral equality of all human beings. However, this relies on the assumption if fetuses are human beings. His idea would rule out genetic screening and selective consumption.

Purdy:

Parents have a moral responsibility to avoid bringing a child into the world with a serious genetic disease if it can be prevented. . It is consistent with embracing the moralequality of all existing human beings

You can have both:

(1) Procreative Norm: It is morally justifiable (or even obligatory) to tryto prevent new, not-yet-existing people from coming into being withserious genetic defects that will cause substantial debilitation orsuffering, in favor of bringing into being healthy people; and

(2) Moral Equality of Persons: Every actual human being already in theworld, healthy or afflicted, is equally deserving of respect, love andcare

What were the legal arguments (in the 1997 Supreme Court cases) for and against a constitutional right to physician assisted suicide (PAS)? What were the underlying principles cited by opposing sides? How did they differ in their interpretations of the Cruzan case?

Legal Arguments :

- For

1. 14th Amendment Due Process Clause protects a fundamental liberty interest: The right of a mentally competent, terminally ill adult to choose the time and manner of their death—including assistance from a physician.

2. Cited Precedent: Cruzan v. Director, Missouri Dept. of Health (1990): Recognized the right to refuse life-sustaining treatment, Planned Parenthood v. Casey (1992): Affirmed the importance of autonomy, dignity, and intimate personal choices in interpreting the Due Process Clause.

Key Argument:

If patients have the right to refuse treatment and die, then by the same logic of personal autonomy, they should have the right to actively choose PAS. (extend liberty to PAS)

The same Autonomy Principle used in Cruzan supports a broader right to PAS

- Against:

Rehnquist's Majority Opinion (Glucksberg & Quill)

1. Rehnquist rejects the idea that Cruzan was about broad autonomy.Instead, he says it was about the right to refuse unwanted physical contact (a right against battery or just to refuse unwanted treatment), not the right to be helped to die

2. PAS has not historically been recognized as a right. Therefore, it is not a fundamental liberty protected by the Constitution.

3. Rehnquist argued that states have strong and legitimate interests in banning PAS, such as:

Preserving human life

Protecting vulnerable individuals (e.g., elderly, disabled, or depressed)

Maintaining medical ethics

Preventing coercion or abuse

Avoiding a slippery slope to broader euthanasia

(no new rights, just a narrow, established legal protection)

How have some argued (on moral grounds) that a right to PAS for terminal patients would equally imply a right to active euthanasia, and that both should then also be extended to non-terminal patients? What ethical principles are they appealing to?

1. From PAS to Active Euthanasia

PAS: The patient self-administers the lethal medication prescribed by a doctor.

Active euthanasia: The doctor administers the lethal dose directly to the patient.

Why should more physically disabled patients be denied access to the same relief simply because they can't perform the final act?

Ethical principle appealed to:Equality + non-discrimination: Equal access to death with dignity for all who suffer similarly.

2. From Terminal Illness to Non-Terminal Suffering

- If we allow PAS because of unbearable suffering and respect for autonomy, then the terminal nature of the condition isn't the morally relevant factor—it's the severity and irremediability of the suffering, plus voluntary, competent choice.

Ethical principles appealed to autonomy, compassion, consistency

Court was worried about the "slippery slope concern" But others, like Brock, say that's not a bad thing—it's just being logically consistent.

In class we distinguished 5 different ways in which a physician might be involved in some way in a patient's death. What are they? What are some of the ethically relevant differences among these 5 situations (in terms of different combinations of factors people often take to be morally significant)? What is the difference between death-hastening pain control and active euthanasia? Why does the Catholic Church allow one but reject the other?

1. Withdrawal of Aid (WA)

Letting the patient die by stopping life-sustaining treatment (e.g., ventilators, feeding tubes),Not intended to kill, letting die

2. Death-Hastening Pain Control (DHPC)

Using pain meds (like morphine) at doses that may hasten death as a side effect, Not intended to kill, but accepted as a risk

3. Terminal Sedation (TS)

Rendering the patient permanently unconscious while withholding nutrition/hydration until death, could be seen as letting die, but also feels close to killing

Still, usually: no explicit intention of death

4. Physician provides the lethal drug; patient self-administers, Intention to die: from patient, not physician

5. Active Euthanasia (AE)

Physician directly administers the lethal drug

Both physician and patient intend the death

Counts as: killing with intent

Death-hastening pain control aims to relieve suffering with death as a possible side effect, while active euthanasia directly intends death as the means of relief.

The Catholic Church uses the Doctrine of Double EffectIt's morally acceptable to do something that has two effects: A good effect (pain relief), A foreseen but unintended bad effect (hastened death) so So in DHPC, the death is not intended, just tolerated if it happens.

What complications arise in connection with DNR orders or advance directives, and how might they be addressed? E.g., problems of interpretation; problems of past wishes vs. present interests. What further information can be very useful in helping to avoid problems of interpretation (apart from having a proxy involved, which is also helpful)? That is, what do we need to know, beyond the directions themselves, in order to interpret them properly and avoid either undertreating or over-treating?

Advance directives and DNR orders often use general language, which can be unclear in complex medical situations. The main issue is that what the patient said isn't always what they meant. you may undertreat or overtreat against their actual wishes

What are the central ethical issues that arise in connection with 'genetic abortion'? What are Kass's slippery slope arguments and how might one respond to them? Would his arguments against genetic abortion equally apply to the use of PGD for similar purposes, and is such an argument against PGD plausible? What is Purdy's view about using PGD or, if necessary, genetic abortion for very serious cases of genetic problems? What is her support for this?

Two types of slippery slope:

1. Justificatory

- Even if fetuses aren't moral persons, the practice of genetic abortion will change societal attitudes—leading to decreased respect and care for people with disabilities. sends message that certain lives "should not have been born."

2. Empirical

- The reasoning used to justify genetic abortion (e.g., preventing suffering) would logically justify other harmful practices (like euthanizing disabled people), because both reject the moral equality of all human beings, assumes that fetuses and born persons have the same status.

Critiques against Kass:

- Against Justification: accepting the first would commit us logically to abandoning the principle of moral equality, creates an inconsistency between a fetus can be killed and all people have equal moral worth (if we assume that fetuses are human beings)

it would also rule out: PGD Screening embryos for defects before implantation.

Genetic screening: Checking for inherited conditions before pregnancy.

Selective conception: Choosing a partner or donor based on genetic risk.

Because these practices aim to avoid bringing a child into the world with a serious genetic condition. that would send the same "message" that lives with disabilities are unwanted or inferior.

PURDY: moral duty to use PGD to avoid creating children with severe, preventable genetic diseases.

Justification:

1. Preventing Suffering

2. Distinction between perspectives: A person with a disease may still be glad to be alive (post hoc),

But that doesn't mean it's morally right to bring such a person into being when the suffering was preventable (ex ante).

3. No Right to Be Conceived, we're not wronging anyone by using PGD or abortion

4. Protecting the Future Child's Interests: outweighs parental desires for genetic relatedness or personal preference

How did one family we read about and discussed use PGD not just to ensure the health of the child they were creating but also to serve a medical purpose for someone else? What was the name of the girl with Fanconi anemia who was successfully treated with umbilical cord blood from her sibling who was created using PGD? What are some ethical issues that could arise in some hypothetical variants of this case that we considered?

The Nash Family: Molly Nash, was born with Fanconi anemia. To help treat her, her parents, Jack and Lisa Nash, used PGD to select an embryo that would be both free of Fanconi anemia and a histocompatible match (HLA match) for Molly. The resulting baby, Adam Nash, had his umbilical cord blood used to successfully treat Molly.

PGD can be used negatively (to rule out something) or positively (to choose for something) in terms of medicine

Ethical Issues that can arise:

Is it a problem to select and bring a child into the world primarily to help someone else?

Is it a problem to select and bring a child into the world primarily to help someone else?

- Risks instrumentalizing the new child,

Violates respect for human dignity.

"Even if there is some ethical concern, how does that weigh against the enormous benefit (for Molly and the family)?"

Could this practice lead us down a slippery slope of devaluing human life?

HYPOTHETICAL COMPLICATION

- Risk or Pain to the New Child

Slide poses a case where donation requires more than cord blood (e.g., a kidney).

Ethical questions:

Is it right to create a child with the intention of subjecting them to medical risk, pain, or sacrifice?

What if the only embryo that's both a histocompatible match and free of Fanconi anemia has some other significant genetic defect?

Other embryos are healthy but not matches.

Would you be choosing a damaged embryo over healthy ones, for instrumental purposes?

This may violate the Purdy principle: that parents have a moral obligation to avoid bringing children into the world with serious health problems when avoidable.

Raises the issue of lack of consent from the future child

What famous court case did we discuss involving informed consent, where a young man (who wound up paralyzed) was found to have been denied information about risk that he should have been given in order to have been able to provide truly informed consent to his surgery? What principle did the court articulate in that decision?

Canterbury v. Spence

Jerry Canterbury underwent surgery for back pain and was not informed of the risk of paralysis, which ultimately occurred after the procedure. He and his family sued, arguing that he was denied the opportunity to make an informed decision because the doctor had withheld information about significant risks.

Reasonable Person Standard: Doctors must disclose "material risks"—that is, risks that a reasonable person in the patient's position would likely consider significant when deciding whether or not to undergo the proposed treatment.

Are we human organisms? Were we once blastocysts? Why does McMahan deny both of these? What moral status does a blastocyst have or lack, and why? How might considerations of cloning technology be used to cast doubt on the moral significance of totipotency? What is it about human life that is valuable, and why? What implications might this have for end-of-life decisions? What is death, for McMahan? How do the distinctions he makes complicate use of the dead donor rule for organ transplantation decisions? Should the dead donor rule be modified?

Why does McMahan deny this?

He challenges two key premises of the Blastocyst-Origins Argument, which claims:

The blastocyst is a human organism.

We are human organisms.→ Therefore, we were once blastocysts and always had the same moral status.

McMahan says The blastocyst is not yet a human organism bc that an organism is a single, integrated system with parts working together (blastocyte is more like bag of marbles) and

We are not identical to our human organisms:

We are embodied minds—conscious beings—not just biological entities

On McMahan's gradualist view, the blastocyst has very minimal moral status.

It is not a person, has no consciousness, no interests, and no awareness.

Therefore, its destruction (e.g., for stem cell research) may raise some moral concern, but not enough to prohibit such research outright

cloning technology (like SCNT) shows that

Any body cell can be reprogrammed to become totipotent (and potentially an embryo), not just blastocytes (or any totipotent cell).

If potential alone gave moral status, then every skin cell would have personhood—which is absurd. Takeaway: Mere potential to become a person doesn't equal actual moral status.

McMahan says what's valuable is:

Not just being biologically alive,

But being a subject of experience

This complicates the Dead Donor Rule (which says we can only take organs after a patient is dead): If someone's mind is gone, but the body is still alive, McMahan argues they are already dead as a person. might be morally justifiable to take organs before biological death, since the person is gone.

Should we revise the Dead Donor Rule?McMahan and others suggest: yes, at least in some cases—especially if it improves organ availability and respects the actual death of the person, not just the organism

Is a condition such as blindness or deafness a disability / pathology in human beings, or just a cultural difference? Would it be a disability / pathology in a non-human animal that normally has that capability, e.g., in a fox? What is and is not meant by claims of disability or pathology? What are some ways in which people might sometimes be talking past each other in this debate, as discussed in class?

IDK WHERE TO FIND THIS

How is a slippery slope argument supposed to work? What would you need to show in order to make a slippery slope argument compelling? How might one try to refute such an argument?

we looked at a number of ethical complications that arise in connection with potentially rationing scarce life-saving resources(ventilators)during a pandemic. What are they? What are some of the proposals for how to ration when necessary, and what ethical issues arise for each?

Suppose we adopt a policy of allocation based simply on degree of medical need for the ventilator together with likelihood of benefit from it (in terms of at least surviving the current health crisis and going home from the hospital): how might even this objective policy, which does not directly consider factors such as age or disability, wind up indirectly discriminatory against members of racial minority groups?

More generally, what roles do structural injustices or inequities (past and present) play in explaining the disproportionate impacts of the pandemic on minority communities (higher rates of infection, hospitalizations, deaths)

Rationing of scarce medical resources

Ethical Concerns:

- Competing proposals exist for how to ration care:

Maximize Lives Saved

Treat each life as equal—save the most people regardless of age, condition, etc.

Ethical issue: May not be the most efficient use of limited resources (e.g., someone may survive but require very long ventilator use).

Maximize Life-Years

Prioritize younger patients, they have more years to live.

Ethical issue: Can become ageist, ignoring individual life circumstances and past contributions.

QALY

Prioritize those expected to have higher quality of life.

Ethical issue: Risks discriminating against people with disabilities, suggesting their lives are worth less

Likelihood of Imminent Benefit (SOFA-based scoring)

Prioritize those who:

Need the ventilator urgently,

Are most likely to survive and recover if given one.

Avoids explicit bias based on age, disability, or social role.

Problematic: Although this system seems objective, it may indirectly disadvantage already marginalized groups

Even if we use a seemingly fair and objective systembases priority on likelihood of survival there are indirect ethical problems

- Structural disadvantages mean that Black, Latinx, Indigenous, and other marginalized groups have higher rates of comorbidities

These comorbidities lower their SOFA scores, meaning they're less likely to receive scarce ventilators.

even neutral policies can reinforce and compound past injustic

Structural factors :

Poorer living conditions: harder to isolate, higher exposure.

Job insecurity: frontline or essential jobs with high exposure, no sick leave.

Health inequities: chronic diseases more common due to environmental and economic injustice.

Distrust of medical systems: from historical and ongoing racism.

Lack of access: to information, testing, vaccination, and treatment.

What are the fundamental ethical values that help determine the proper goals of a health care system? How do some authors we read argue from certain basic ethical values to conclusions about what a health care system should look like in a decent society? What are the key features of a just health care system according to such arguments?

UNSURE ABT THE SECOND QUESTION

How does the U.S. health care system (both prior to the Affordable Care Act and since its passing) compare to health care systems in various other developed, capitalist countries? What are some of the central features of the U.S. system that differ from features common in other countries? (As one illustration: what happened to someone featured in one of the films we watched, who had lupus?) How do we compare in terms of spending? In terms of access, efficiency and equity? What basic changes were made by the ACA? Was it a "government takeover of healthcare"? What are some of the main options for trying to move closer to the goal of universal, high-quality coverage, and what are some of the advantages and challenges of each?

America Before ACA: 45 mil uninsured, 700,000 bankruptcies per year, Coverage tied to employment

Others

- all offer universal health care, Systems publicly funded or non-profit even if associated with private insureres

woman with lupus denied coverage for being "uninsurable.", had to get divorced from her husband so she could qualify for Medicaid.

shows how fragmented, for-profit coverage systems distort people's lives

U.S. spends more per capita for healthcare than any country, worse results

ACA CHANGES:

Banned denials for pre-existing conditions.

Allowed young adults to stay on parents' plans until age 26.

Expanded Medicaid (though not in all states).

Created insurance exchanges and gave income-based subsidies.

Included minimum essential benefits to prevent junk plans

DID NOT GET RID OF PRIVATE INSURERES, not govermnet takeover

moving towards Universal health care:

1. Strengthen ACA by Add a Public Option, (medicare extra for all) Provide increased subsidies., but keep private too. this is Politically more feasible than single-payer.

Builds on existing infrastructure.

Retains choice for people who like their employer plans, but Still keeps a complex, fragmented system with private insurers and high overhead.

Some states (especially red states) refuse Medicaid expansion, limiting the impact.

Requires strong regulation to avoid junk plans and protect coverage quality.

2. Single-Payer System ("Medicare for All")

- Eliminate private insurance for basic coverage.

One government-run program, Would replace employer-based and individual private plans,

Most efficient system, Everyone is covered, Eliminates medical bankruptcies, negotiating power over drug and hospital prices

opposition from insurance and pharmaceutical

Resistance from hospitals, rely on high private payments.

require higher taxes

What is the main argument behind imposing an individual mandate in the ACA (or in any system where insurance companies are required to cover all who apply, i.e., "guaranteed issue")? What are the economic and moral worries about a largely private system that includes guaranteed issue without a mandate?

The individual mandate requires everyone to have health insurance, Needed to To maintain risk pooling,

If insurers are required to accept everyone (even the sick), but people are not required to buy insurance until they need it, then only the sick enroll.

This creates a sick risk pool, driving up premiums for everyone and destabilizing the system.

The mandate ensures that healthy people also participate, balancing the costs of those who require care

If you have guaranteed issue without a mandate, you risk:

People will "free ride": wait until they're sick to buy insurance.

Premiums go up, insurers pull out of the market, and the whole system collapses.

It's unfair to let people benefit from insurance only when they're sick, while avoiding contributing when they're healthy.

The rest of society bears the cost — hospitals eat the cost of emergency care for the uninsured, or taxpayers cover it indirectly.

At the end of the second documentary we watched (on the U.S. healthcare system prior to the ACA), they highlighted the case of Nikki W., a young woman with lupus. Is it true or false that she never at any point received expensive medical care (such as necessary surgeries) due to her problems with insurance?

IDK

What is health care rationing? Do we ration health care now? Should we? If so, on what basis? What are Peter Singer's views on this? What are QALY's? What ethical problems arise for focus on QALY's?

Health care rationing means allocating limited medical resources—like ICU beds, expensive treatments, or organ transplants—when not everyone can receive everything they need. It's about making difficult decisions on who gets what when there isn't enough to go around.

"We've always rationed... based on: ability to pay"

The U.S. health system rations based on wealth: people with less money often go without needed care. Even people with insurance may face limits (e.g., denied treatments, out-of-pocket costs).

Emergency care is provided, but often too late and at far higher cost.

Peter Singer and the slides call this morally incoherent—those protesting "rationing" often support systems that already ration care for the poor.We already ration health care in the U.S.—by income, employment status, and insurance coverage. . The moral question is not whether to ration, but how to do so fairly."

QALY = a year of life, adjusted for quality.

Singer: Aim to maximize QALY's! Ethical Worry: Doesn't this discriminate against people with disabilities?

Singer: This doesn't wrongfully discriminate: it'sjust a realistic reflection of our existing commitment to valuing higher quality of life overlower quality of life—as when we seek cures for diseases, injuries and disabilities, which reflectsthe judgment that healthy life is more desirable.This commits us to the QALY approach, he says.

In Singer's view, these two positions conflict: if you're pushing for a cure, you're implying that life with a disability is worse—so how can you claim your life is equally valuable?

The slide says he's confusing two things:

Quality of Life (Desirability) and Moral Worth (Equality of Persons)

You can want a cure (because you prefer a higher quality of life) without thinking your current life is less valuable.

meaning that singer is incorrect