string (required)The post hoc perspective acknowledges that existing people with diseases or disabilities have lives worth living and deserve respect and care, without denying that their lives would be better for them without the condition10.... Choosing to avoid creating a child with a condition like Down Syndrome does not necessarily mean one devalues existing people with Down Syndrome; one can recommend avoiding bringing a child into the world with the condition while still loving and respecting existing individuals who have it. The argument is seen as potentially proving "too much" if it were correct20. ## Kass's Arguments and PGD * The sources explicitly state that Kass's arguments against genetic abortion would equally apply to the use of Pre-implantation Genetic Diagnosis (PGD) for similar purposes, such as screening against genetic defects and diseases. * The logic is that using PGD to avoid bringing an embryo with a genetic defect into being sends the same negative "message" that Kass attributes to genetic abortion. * However, the sources argue that such an argument against PGD is deeply implausible.22 Using PGD to screen against severe conditions like Huntington's Disease is widely considered acceptable, and sometimes even morally required21. This practice, and mere genetic screening and selective conception, have not historically led to the erosion of values Kass predicts for genetic abortion22. ## Laura Purdy and Genetic Abortion * Laura Purdy, as presented in the sources, argues that it is morally imperative for potential parents to take available steps to avoid passing along terrible genetic diseases22. She supports the use of methods like PGD (via IVF) and, if necessary, genetic abortion in such serious cases22. Her support for this view rests on the idea that there is a moral obligation to try to provide every child brought into being with roughly normal health23. This obligation, she argues, outweighs any potential 'right' to have genetically related offspring or offspring who share one's disability23. # Nash Family and PGD * Pre-implantation Genetic Diagnosis (PGD) was used not only to ensure the health of the child being created but also to serve a medical purpose for someone else. * They added another criterion: the selected embryo also needed to be an HLA match (histocompatible) with their existing sick child. * The name of the girl with Fanconi anemia who was successfully treated with umbilical cord blood from her sibling, created using PGD for HLA matching, was Molly Nash. ## Ethical Issues in Hypothetical Variants of This Case : * Using the new child for another's benefit: The basic ethical question raised is whether it is ethical to select one embryo over another. for some other purpose, namely, helping an existing sibling * Risk or sacrifice for the new child: What if the donor procedure involved substantial risk, pain, or sacrifice for the new child * Selecting a "damaged" embryo for instrumental purposes: What if the only HLA-matched embryo that did not have the original disease (like Fanconi anemia) happened to have some other, unrelated but significant genetic or chromosomal defect # Court Case Involving Informed Consent * Canterbury v. Spence (1972) * A young man 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 * Principle: Disclosing "material risks" * A risk is material "when a reasonable person, in what the physician knows or should know to be the patient’s position, would be likely to attach significance to the risk or cluster of risks in deciding whether or not to forego the proposed therapy # McMahan's View ## McMahan's Denial * According to Jeff McMahan, we are not human organisms. He argues against this claim based on two thought experiments: * the Brain Transplant Argument * the Dicephalic Twinning Argument * McMahan also denies that we were once blastocysts ## Moral Status of a Blastocyst * According to McMahan both premises are false * the blastocyst is the human organism in its early stages * we are human organisms ## Totipotency * The argument against the moral significance of totipotency proceeds as follows: * somatic cell nucleus possesses formal totipotency when placed in the right environment (like an enucleated egg in SCNT cloning) * a somatic cell nucleus clearly has no moral status at all ## Value of Human is Valuable * The Person-Centered View: This view holds that what has intrinsic value is human personhood (or sentient subject-hood), along with the valuable activities, experiences, and relationships associated with it. * The Life-Centered or Metabolic View: This view asserts that basic life in a human being is a great value in itself or because it sustains the human organism, even when it is not supporting personhood or sentience. ## McMahan's Definition of Death * Death of the Human Organism: This is biological death, defined as the irreversible cessation of integrated functioning of the organism as a whole * Death of the Human Person (You): This is defined as the irreversible cessation of capacity for consciousness # Disability / Pathology * Some perspectives, often associated with Deaf culture, argue that deafness is not a disability or pathology but rather a mere difference or a cultural identity, akin to speaking a different language * Suggestion that a condition tends to be spoken of as a disability or pathology when it involves: * A privation of a species-typical capability. * Resulting in an inhibition of some aspect(s) of typical human functioning. * In a way that inhibits the realization or enjoyment of some good that is typically a significant part of human flourishing ## Perspectivalism * Involves distinguishing between two different viewpoints * The post hoc perspective of an existing person who has a life history, developed identity, relationships, and sense of meaning * The ex ante perspective of potential parents making procreative decisions about bringing a new, non-existent child into being. # Slippery Slope Argument ## Slippery Slope Argument Definition * Allowing a certain action or policy X, which might seem acceptable in itself, will inevitably lead to a slide down a "slippery slope" to a more problematic and undesirable outcome Y therefore, the argument concludes, X should not be allowed because of the bad consequences it will bring. * **Justificatory (or Logical) Slippery Slope Argument**: claims that the principle or rationale (R) used to justify allowing X would equally justify or logically commit us to allowing Y8. Thus, to avoid Y, one must reject X4.... Kass's argument that allowing genetic abortion (X) would require abandoning the principle of the moral equality of human beings (leading to bad steps Y) can be interpreted this way: the principle underlying genetic abortion (R) is allegedly inconsistent with moral equality. * **Empirical (or Causal) Slippery Slope Argument**: claims that allowing X will, as a matter of psychological, sociological, or political fact, cause us to slide into allowing Y Arras argues that allowing PAS for terminal, competent patients (X) will, in practice, lead to broader, inappropriate uses of PAS, extensions to Active Euthanasia (AE), and eventually AE for non-terminal or incompetent patients (Y), with negative social consequences. ## How to Refute A Slippery Slope Argument * Argue that accepting X based on principle R does not logically commit you to Y One can do this by identifying morally relevant distinctions between X and Y that allow one to consistently accept X while rejecting Y, and argue that principle R applies differently or recognizes these distinctions * Challenge the empirical claim: Argue that the slide to Y is not unavoidable or not probable as a matter of fact6.... Point to real-world evidence where X has been permitted but Y has not occurred (e.g., the experience with PAS in Oregon) * Argue against the assumed erosion of values Contend that people are capable of holding nuanced positions and that allowing X does not necessarily lead to a harmful erosion of values or attitudes towards those affected by Y # Ethical Complications of Rationing Scarce Resources * Defining "the Most Good": A primary aim of rationing might be to do "the most good for the most people. Is it maximizing the number of lives saved, the total number of life-years saved, or the number of Quality Adjusted Life Years (QALYs) saved * Fairness and Equity: Rationing decisions must also strive to be fair and equitable * Psychological Toll on Providers: Forcing healthcare workers to make life-and-death rationing decisions can lead to significant psychological distress, including depression, anxiety, and PTSD * Underlying Structural Issues: Many "moral dilemmas" in a pandemic, including those related to vulnerability and access to resources, arise not just from the crisis itself but from pre-existing background structural injustices and inequities * Inevitable Nature of Rationing: # Proposals for Rationing and Associated Ethical Issues ## Maximizing Life-Years Saved: * saving those expected to live longer, often favoring the young over the old * Ethical Issues: blatant age discrimination ## Maximizing Quality Adjusted Life Years (QALYs): * Allocates resources to maximize the combination of years lived and the quality of those years, potentially giving less weight to years lived with significant disability * Ethical Issues: discriminatory against people with disabilities ## Focus on Likelihood of Imminent Benefit: * Prioritizes those who are most desperately in need of the resource (e.g., a ventilator) and who are most likely to benefit from it by surviving the current health crisis and being discharged from the hospital * Ethical Issues: can lead to indirect discrimination ## Prioritizing Healthcare Workers: * Gives special consideration to frontline healthcare workers for scarce resources * Ethical Issues: undermining the fundamental moral equality of all persons ## Indirect Discrimination in the Imminent Benefit Approach: * The likelihood of benefit is often assessed using clinical scores that are influenced by underlying health conditions or comorbidities * The comorbidities that negatively affect these scores and lower a person's priority for a ventilator are the direct result of past and present structural injustices, particularly racial injustice * Therefore, the very health disadvantages imposed by society's past wrongs are used to deny care to the victims of those wrongs in the present # Role of Structural Injustices in Disproportionate Impacts * Long-term discrimination in areas like housing, employment, education, environmental policies, and healthcare has created systemic disadvantages. This results in patterns of poverty, segregation, lack of wealth accumulation, tenuous employment, and limited access to quality healthcare * These factors make it harder for individuals to protect themselves during a pandemic * Essentially, structural flaws push certain populations to the "edge of a cliff," leaving them unnecessarily vulnerable to crises like COVID-19 # Ethical Values for Health Care System Goals * Fundamental Ethical Values Guiding Principles: * Principle of Respect for Autonomy * Principle of Non-Maleficence * Principle of Beneficence * Principle of Justice ## Kai Nielsen and Socialized Medicine * Nielsen builds an argument starting from the Axiom of Equality * this moral equality implies that each person's well-being matters equally, and therefore, a decent society must show equal concern for each person's basic good * a person's well-being requires both having meaningful control over their lives (exercise of autonomy) and being able to meet their basic needs. * Meeting everyone's basic health care needs requires that the healthcare system be viewed as a basic public service aimed at this goal, rather than just a sphere for private profit-seeking ## Norman Daniels and A Right to Health Care * Daniels similarly argues that all people have a right to basic health care as a matter of social justice * This right is grounded in society's obligation to provide all its people with fair equality of opportunity * achieving fair equality of opportunity requires providing individuals with the necessary resources and conditions to enable them to function as fully as possible # Key Features of a Just Health Care System Based On these arguments, a just healthcare system in a decent society should have several key features * Universal and Real Coverage * Equity * Primary Aim: Meeting Basic Health Care Needs * Protection Against Financial Ruin * Not Primarily Profit-Driven * Preservation of Opportunity # US Health Care System ## Ethical Backdrop * Authors like Kai Nielsen and Norman Daniels argue that a morally decent or just society, one that respects the basic human dignity and equal moral standing of each member, must ensure that all its members have access to basic conditions for well-being and opportunities to function fully. * Health care needs are central to meeting basic needs and preserving the opportunity for physical and social functioning, which are threatened by disease and disability. Thus, a just society has an ethical obligation to provide health care to all its members. ## Pre-ACA System * Large Uninsured Population: Around 45 million Americans were uninsured * Profit Maximization Driving Practices: The system was largely consigned to a largely unregulated, for-profit system * Vulnerability and Job Lock * High Costs and Inefficiency ## Comparison of US System with Others in the World: * Spending: The U.S. spends dramatically more on health care both as a percentage of GDP (around 19.7% in 2020, nearly double the OECD average of 9.9%) and per capita ($12,914 per person annually) * Access, Efficiency, and Equity: The U.S. consistently ranks poorly in terms of access, efficiency, and equity -The Commonwealth Fund ranked the U.S. dead last among 11 developed countries for access, efficiency, and equity * Outcomes: U.S. outcomes like life expectancy and infant mortality rates lag behind many other developed nations that spend significantly less ## Affordable Care Act (ACA) Changes: * Reduced Uninsured Rate: It significantly reduced the number of uninsured Americans, with roughly 20 million gaining coverage * Protections: It eliminated disqualification for pre-existing conditions, allowed young adults to stay on parents' plans until age 26, and required plans to cover essential health benefits (EHBs) * Subsidies and Mandate: It provided subsidies to make insurance more affordable through exchanges and included an individual mandate (with a penalty) to ensure a stable risk pool * Medicaid Expansion: It proposed expanding Medicaid, though some states refused to participate, leaving millions of low-income residents without coverage ## Options for US System * Bolstering the ACA Favored by the Biden administration. Fixes include: * adding a Public Option (a government-run insurance plan that would compete with private insurers * increasing funding for subsidies to make plans more affordable * potentially requiring state Medicaid expansion * Single-Payer System ("Medicare for All"): This would replace the private insurance industry with a single government insurer # Mandate in ACA * An individual mandate, like the one included in the ACA (though later effectively removed by eliminating the penalty), addresses this by requiring most people to have health insurance or face a penalty (prior to the penalty's elimination * This comparative model, combining guaranteed issue with an individual mandate, was not unique to the ACA; it was also part of Switzerland's system and Mitt Romney's plan in Massachusetts. ## Economic and Moral Worries of a Largely Private System Economic problems: * Unstable Risk Pool * Sky-High Premiums * Insurance Market Collapse * Weakening of Plan Quality Moral problems: * "Free-Riding" * Unfairness to the Sick and Responsible * Prioritizing Profit Over Needs * Increased Vulnerability # Nikki W and Expensive Healthcare * Statement is: FALSE * She did receive expensive emergency care. The problem stemming from her insurance issues was that this care was delayed ("too late") and ineffective in managing her long-term condition because she didn't have access to the necessary consistent, ongoing treatment. # Health Care Rationing ## Ethics of Health Care Rationing: * Healthcare rationing, in a broad sense, refers to the process of limiting the distribution of resources related to healthcare. * We already ration healthcare -Yes * The sources argue that we already ration healthcare, particularly in the United States, even if the term is often used as a scare tactic. * The most prominent way healthcare is currently rationed in the U.S. is based on ability to pay. ## Bases for Ethical Rationing * Maximizing the number of lives saved * Maximizing life-years saved * Maximizing Quality Adjusted Life Years (QALYs) * Likelihood of imminent benefit * Prioritizing certain groups * Avoiding "First Come, First Served" (FCFS) ## Peter Singer and HealthCare * explicitly states this viewpoint: The argument is that since rationing is already happening (often unfairly), we need to develop more deliberate, transparent, and equitable ways to do it. * suggests thinking in terms of cost-effectiveness and proposes maximizing Quality Adjusted Life Years (QALYs) as a way to make rational decisions about how to allocate resources to do "more good". ## QALY Definition * A Quality Adjusted Life Year (QALY) is a metric used in healthcare economics that combines the quantity of life lived with its quality The idea is that maximizing QALYs means aiming to achieve the most "good" in terms of healthy life years across the population. The main ethical problem that arises from a focus on maximizing QALYs is discrimination against people with disabilities ## Criticisims of Singer & Attempts to Respond to Them: Singer attempts to respond: * that valuing QALYs is just a realistic reflection of our societal commitment to valuing higher quality of life, evidenced by our pursuit of cures and treatments. A critique of Singer's response: * is that he conflates two distinct ideas: * Quality of Life: Individuals' preferences about the desirability of living with certain conditions, which might lead someone to prefer healthy life over life with a disability. Moral Standing: The principle that all persons have equal moral standing and equal claims to treatment and life-extension, regardless of their health status or perceived quality of life.