Theology Ethics and Medicine Studyguide

• Distinguish between medical utility and social utility.

o Medical utility 1. Medical need and probability of success - objective criteria for selection 2. Judgments about medical utility should figure into decisions to ration scarce medical resources 3. Differences in pts' prospects for successful treatment are relevant considerations as is maximizing the number of lives saved o Social utility 1. Criteria based on what is of value to society. Narrow social utility: specific roles and functions; Broad social utility: Overall value to society 2. Analogy from WWII when scarce resources of penicillin was distributed to US soldier suffering from venereal disease rather than to those suffering from battle wounds - soldiers suffering from VD could be restored to battle more quickly 3. Medical institutions and personnel are trustees of society and must consider probable future contributions of pts

• AGAINST Cloning for Biomedical Research: Take position that it is "morally wrong to exploit and destroy developing human life, even for good reasons..."

o Moral status - Embryo should be respected as a potential human and we should be obligated to protect it o Exploitation of developing human life - creation of nascent human life simply to be used as a tool and then destroyed is morally wrong o Moral harm to society crossing boundary from sexual to asexual reproduction --> approves principle of genetic manipulation slippery slope - opens door to other moral hazards puts pressure on government to mandate destruction of embryos relieving suffering is not our only moral obligation - must respect all life both strong and weak, as well as refuse to secure good of some human beings by sacrificing lives of others

Jewish perspective on research cloning (Dorff)

- if cloning can end human suffering and heal people, then we should do it

Cahill

Donor methods of reproduction are morally questionable. Our society believes too often that if two parties agree, what can be wrong? Cahill thinks the Vatican's document focuses too much on the love in sexual intercourse rather than sexual intercourse being carried out within a loving marriage relationship. Cahill believes the document focused on the wrong issues and shouldn't only have focused on attacking couples who look for alternative substitutes for sexual intercourse

• Explain reasons for and against using alcoholism as a criterion for access to liver transplantation.

For using alcoholism as a criterion for access to liver transplantation: - Donor livers are a non renewable, scarce resource; this fact necessitates that distribution standards (may they even be discriminatory in nature) be set for allocating this resource and that these standards mandate that ARESLD patients receive donor livers only after ESLD patients are provided with them - Allowing ARESLD patients to have the same priority on transplant waiting lists as ESLD patients would lead to a decline in public support for and approbation of liver transplants---thus, less organs will be donated, which will decrease the already scarce supply of donor livers; using alcoholism as a criterion would maintain public support so that organs continue to be donated - Patients with ARESLD may resume consuming alcohol after a transplant and may develop ARESLD again, thereby wasting the liver. - Alcoholism is a disease; appropriate treatment options are available to treat it. therefore, alcoholics should be held responsible for obtaining treatment that could very well prevent the development of ARESLD; if they were not responsible enough to seek treatment for their alcoholism, then they should be denied priority for liver transplants. - Ethical principles upheld: 1) Under the principle of fairness, using alcoholism as a criterion is a fair and just way to allocate donor livers; because donor livers are scarce, it is fair to hold people responsible for their choices, such as not obtaining alcoholism treatment, and to allocate livers on this basis a. Patients who develop ESLD through events out of their control should have higher priority in liver transplantations than people with ARESLD who failed to obtain or follow through with treatment for alcoholism. 2) Principles of distributive justice: a. To each, similar treatment for similar cases: Patients with ARESLD are dissimilar to patients with ESLD since their liver failure was preventable; thus it is acceptable to treat them differently and to give them lower priority for liver transplants. b. To each, treatment according to personal effort: Alcoholics can be held responsible for seeking treatment for their disease and consequently preventing ARESLD; if they did not make the personal effort to prevent ARESLD through treatment for their alcoholism, then they should be held responsible for that decision and be denied equal priority for liver transplants as patients with ESLD. 3) Greater utility can be obtained by granting patients with ESLD liver transplants before patients with ARESLD because it is more probable that the use of this scarce resource will be maximized if it is transplanted into an ESLD patient than if it were transplanted into an ARESLD patient. Against using alcoholism as a criterion for access to liver transplantation: - If patients with alcoholism are denied treatment for their "personal misconduct" then it would only be fair to deny treatment to patients who have diseases due to their own personal misconduct as well; however, this is not the case, so alcoholics should not be discriminated in this way. - Alcoholism is widely regarded as morally wrong and blameworthy; yet, this does not justify the categorical denial of liver transplants to patients with ARESLD. Excluding ARESLD patients from liver transplants based on the moral failing of the patient assumes that some level of moral virtue is required for a transplant and some level of moral vice disqualifies one from a transplant; however, determining what constitutes a moral virtue and vice and what rewards and penalties they deserve can seemingly appear to be arbitrary and not universal. - Penalizing ARESLD patients by denying them transplants would be holding some groups arbitrarily to a higher standard than others. - Denying ARESLD patients candidacy for liver transplants based on probable poor outcomes for this group compared to others is based on a false premise; alcoholics have been shown to do well after liver transplantations. - The low survival rate of alcoholics after they have received a transplant is not a valid reason to exclude them from transplant candidacy; members of other groups who are known to have low survival rates are not excluded from transplant candidacy so neither should alcoholics. - Ethical principles upheld: 1) Principles of distributive justice: a. To each person an equal share: Denying alcoholics transplant candidacy would be an unequal distribution of a scarce resource. However, allowing patients with ARESLD and ESLD to have access to liver transplants would uphold equality. b. To each person according to need: ARESLD and ESLD patients both need liver transplants for survival. Excluding one group from transplantations would unfairly be placing one group's needs over another's. 2) Principle of fairness a. It is unfair to deny treatment to a group based on the circumstances of their personal misconduct or the moral blameworthiness of their actions. Including both alcoholics and ESLD patients for transplant candidacy is fair and just.

• How would different ethical principles apply to the above discussions?

Public order principle: focuses on the value of ensuring safety and the provision of necessities

Totipotent Stem cells

Totipotent: The ability to give rise to all the cell types of the body as well as all of the extra-embryonic tissues (i.e. placenta) Ability of a single cell to divide and produce all the differentiated cells in an organism including extra-embryonic tissues

Catholic perspective on research cloning (Meilander)

concerned about limits, slippery slope

Catholic View (Moraczewski)

o Attempts to create a human being without a sexual union go against moral law o Human dignity is violated by cloning because it exceeds the limits of the delegated dominion given to the human race o Cloning would jeopardize the personal and unique identity of the clone and give couples a right to and over the clone o One may not use a means for achieving a good purpose that intrinsically is morally flawed

Eugenics

o Eugenics applied the basic ideas of genetics toward improving the genetic composition of populations of human beings. The idea of survival of fittest and the concept of passing on traits were used to justify sterilizing supposedly undesirable people in order to stop them from producing children like them. Not having imbeciles would therefore increase the health and vigor of the nation.

• According to Parker & Lucassen, what are the advantages of viewing genetic information as a joint account?

o Joint account model - genetic information is shared by more than one person. o In a personal account, which concerns patient confidentiality and its limits, physicians face the problem of breaching the confidentiality of the patient if a third party asks for the patient's genetic information. o However, in a joint account, it is assumed that information should be available to all account holders (meaning all family members) unless there are good reasons to do so otherwise. o A family history will be constructed, which would draw familial information about diseases that members of the family have had. This history will make it easier for physicians to treat patients. o A joint account model will benefit family members who are unaware of their family history. o Joint accounts are consistent with clinical genetics. This is because geneticists work with families, and often develop a sense of responsibility for members of a family. A joint account of genetic data would make it easier for physicians to treat patients. o A joint account would extend the benefits of testing when there is no risk of serious harm to index patients or their relatives. o Joint account model: the genetic information is shared like a joint bank account—anyone with a relatively close relation to the person of interest has access to their genetic information o Advantages expose relevant information to others it may be applicable to, allowing them to be made aware of, and become knowledgeable about their own genetic risks and make appropriate decisions about reproduction Justice: strongest support for it - familial genetic information applies to all relatives so what is available to one person (the source of the information) should be available to all allows physicians to better diagnose and advise the patient as to their conditions and risks the benefits to be gained outweigh the harms of violating confidentiality its consistent with clinical genetic practice - geneticists work with families = they're responsible for everyone in the family not just the one that they are strictly consulting

• Differentiate the uses of pre-implantation genetic diagnosis (PGD) and Robertson's assessment of them.

o Pre-implantation genetic diagnosis (PGD) concerns selecting and screening certain embryonic cells for abnormalities. When embryos reach the 8 cell stage, specialists remove a single cell to analyze for chromosomal abnormalities. Clients can then select embryos free of certain diagnosable genetic conditions and diseases. o Robertson's assessment of PGD The issue at hand is the morality of creating and destroying embryos on genetic grounds versus the general idea of selecting embryos and thus putting greater value on some traits over others. Robertson is concerned that increasing the scope of genetic screening of prospective children will move us toward a eugenic world in which children are valued more for their genotype than for their inherent characteristics. Those who are against abortion tend to see PGD is embryo killing. Those who are in favor of In-vitro fertilization (IVF) tend to see PGD as a method to increase the chances of embryo viability. Some people find PGD acceptable as long as it is used on medical grounds, such as PGD for matching an existing child or for children with fatal acute diseases. Robertson is also concerned about using PGD for gender selection • However, PGD for gender variety is a stronger case because the risk of sexism is lessened. He is also concerned about using PGD for other nonmedical related issues such as deafness, sexual orientation, or other traits. If PGD is available to prevent offspring with serious genetic diseases, then PGD for late onset disorders and susceptibility to cancer should be acceptable as well. o early onset/fatal diseases it is ok to use PGD for selection due to the suffering that would be brought on both the child and the family o late onset diseases (fatal) fact that a disease is late onset shouldn't matter, it will still be a major source of suffering the same rational as early onset diseases is applicable to this situation o quality of life conditions it is ok to use PGD due to the suffering quality of life is a serious consideration and the burdens on the child and family are legitimate reasons for the use of PGD o HLA matching for other children having child for this reason is not likely to decrease the parent's love for the resulting child it's not intruding on the child if just taking cord blood, if doing something invasive like bone marrow then its more questionable not commodifying resulting child o Gender selection (for nonmedical reasons) selecting for first child • mostly a potential problem in countries where strong gender preferences (usually for males) selecting for subsequent children • this is ok because it is more likely to be due to a desire for gender variety, having the sex that did not have the first time, not because they believe one is better than the other • it's a legitimate desire to want to raise children of both genders o Non-medical traits ex. hair color, intelligence in order to allow for the other options this will have to be allowed as well; it is a parent's right to exercise control over all parts of the offspring's genome

Therapeutic interventions

o Therapeutic interventions refer to human genetic engineering that seeks to change an individual's genetic makeup in order to eliminate life-threatening or debilitating diseases.

• Protestant View (Meilaender)

o When a sexual act becomes only a project so does the child and the clone's existence is grounded in our will and desire Children should come as a fruition of a union between man and woman, as a gift o We are all of equal dignity with each other and are not at each other's disposal

Dresser's Contract Model

• At the outset of the encounter the professional should disclose to patients any treatment limits so patient can seek service from another professional if need be • Problems; what if patient needs care quickly or no one else can take over the task

Dresser's No conscientious objection

• By deciding to become a particular kind of professional the individual gives up the freedom to avoid certain core duties • However in many cases the core duties of a profession are never explicitly disclosed so hard to say that they agreed to such a constraint on their freedom

Reproductive cloning violates the principles of ethics of human research Concern 1 + 2

• Concern for safety: would be very unsafe given already high mortality and morbidity rates experienced from cloning other mammals • Moral concerns: even if techniques were improved to increase safety, cloning for reproduction would still be morally wrong. o Problems of identity and individuality - each cloned child will be genetically identical to an already-existing individual. This will be impose undue expectations and pressures on the cloned child to be like the "original" o Concerns regarding manufacture - cloned children may be viewed as "products" rather than "gifts" --> commercialization of reproduction o The prospect of new eugenics - cloning would inevitably lead to eugenics due to avoiding genetic mutations associated with natural reproductions or by intentionally selecting desired traits o Troubled family relations - family roles would be drastically changed, which would put strain on social ties. o Effects on society - how society looks at children (i.e. as products of genetic manipulation

Dresser's Compromise

• Urges professionals to seek a compromise between personal beliefs and the patient's interests in obtaining the disputed service • In some cases closer examination of the problem will produce options that allow professionals to maintain their ethical integrity while meeting the patient's needs • But may be some cases in which doctor just doesn't believe in anything that will allow a compromise

Ethics and Human Experimentation By: Rothman

• The article focuses on Henry Beecher's analysis of "Ethics and Clinical Research" which accelerated the movement that brought human experimentation under rigorous federal and institutional control in 1966. • Beecher came up with 22 cases in which researchers adopted invasive or risky procedures without informing their subjects or seeking consent. • Important questions: Were Beecher's 22 cases the work of marginal researchers? Was the mountain of regulations that followed an exaggerated response to a few unusual incidents? And what explains the investigators behavior? o One answer has been to deny that the 22 cases fell within the mainstream of science. But this has been proven wrong formany of these cases took place in major university and government facilities (hospitals). o A second response is the insistence that the researchers involved were working in an ethical vacuum because the basic principles of informed consent were as yet unformulated. • Rothman uses the original articles on which Beecher based his 22 case examples as the sources for his analysis. o Explains how human experimentation has a lengthy history. During the period before Beecher's publication, research ethics was merely discussed because medical ethics was not an active field and also because human experimentation was conducted by a handful of physicians whose subjects were themselves family or neighbors and whose aims were directly therapeutic for the subjects. o Prior to Beecher's publication, as long as clinical research continued to be conducted on a relatively small scale and with therapeutic intent, research ethics wasn't subject to extensive investigation, debate or concern. o The turning point in human experimentation in the U.S. was WWII and practices established during these years profoundly influenced researchers' behavior in the postwar era. In 1941, the CMR (Committee on Medical Research) was established to plan and coordinated medical research. o The CMR was concerned with creating antidotes to dysentery, influenza, venereal diseases, and malaria. Researchers had a hard time locating suitable research sites since research on the battlefield wasn't allowed. Instead, asylum wards where dysentery was endemic were substituted as the setting of research with no objections to experiments on impaired inmates. • These experiments, all of which were unsuccessful, produced serious side effects on subjects. • Dysentery experiments also carried out on retarded residents of an Illinois institution and NJ colony for the "feeble-minded." To research malaria vaccines (for back in 1941 malaria was debilitating and deadly and the Japanese controlled the quinine supply) researchers used psychotic backward patients in hospitals, prisoners in state penitentiaries and infected them with malaria. Public response to such experiments was not to ask whether prisoners were able to give voluntary consent, but to congratulate them for demonstrating "to the fullest extent just how completely this [WWII] was everybody's war." CMR also sought to create a vaccine for influenza, which created a great amount of disability among soldiers. • Some researchers used hundred of residents from state facilities for the mentally retarded and correctional centers for young offenders as testing grounds for the influenza vaccine. o Those who contracted the disease had serious side effects. CMR also allowed researchers to conduct human experiments with prisoners in order to research into the prevention and cure of gonorrhea. • Although consent forms were given to these prisoners (as opposed to subjects from the influenza, malaria, and dysentery trials), the document exaggerated the potential benefit of the research to the subjects. • The exception that was presented by the gonorrhea studies indicates that if principles of informed consent and risk-benefit calculations were occasionally recognized, wartime demands usually obscured them. Only when research didn't have ambiguous social approval (as with gonorrhea), formal review and procedures for obtaining consent became necessary. In sum, the ethics of American research during WWII were utilitarian for it was based on the philosophy of doing the greatest good for the greatest number, even if the rights of some of these subjects were violated. • Using mentally incompetent inmates was justified by the idea that all citizens should be doing their part in the wartime period and that if they had been capable of a momentary flash of competence, they would've participated in research that furthered the war effort. Hence, using them as research subjects didn't violate their interests. • The utilitarian ethic continued to govern human experimentation even after the post-war period because of the war precedent, because the benefits seemed so much greater than the costs, and because there were no groups prominently opposing such an ethic. o American researches and physicians didn't adhere to the Nuremberg Code. • Conclusion: o The revolt against researchers that continued to pursue a utilitarian ethic was fueled by Beecher's article in the 1960s as well as a new wariness about the fruits of scientific research and a general hostility towards authority. o Federal regulations mandated the creation of institutional review boards to ensure that subjects had given informed consent and that risks did not outweigh the benefits. o For the first time, decisions that that were traditionally left to the individual physicians came under collective surveillance • Know the ethical considerations in the use of placebos, and the concept of 'clinical equipoise'. How do these concepts apply to international clinical research? See B&C and Emanuel et al. Conditions for Ethical Clinical Research: (*Emanuel, Wendler, Grady) 1. Value 2. Scientific validity 3. Fair subject selection 4. Favorable risk-benefit ratios 5. Independent review 6. Informed consent 7. Respect for enrolled subjects "Fulfilling all 7 requirements is necessary and sufficient to make clinical research ethical" Clinical equipoise: On the basis of the available evidence, members of the relevant expert meical community are equally poised between the treatment strategies being tested in the RCT, because they are equally uncertain about, and equally comfortable with, the known advantages and disadvantages of the treatments to be tested (or the placebo being used).

Dresser's Draft-board approach

• Draws on military's approach • Requires objectors to explain and defend their opposition to performing a particular medical procedure • Seeks to separate sincere beliefs from other motivations • Problems; can be damaging to morale, cannot detect skilled liars, and review process may be incomplete or corrupt

Dresser's Referral

• Duty to refer or transfer patients to another professional willing to provide the same contested service • Fails to meet patients' interests when no one else is available • What if any assistance in securing the service is viewed as immoral by the physician?

Requirement 2

2. Scientific Validity-the research must be methodologically rigorous a. Explanation: Methods must be valid and practically feasible: the research must have clear scientific objective; be designed using accepted principles, methods, and reliable practices; have sufficient power to definitively test the objective; offer a plausible data analysis plan; and must be possible to execute the proposed study. b. Justifying Ethical Values: Limited resources and the avoidance of exploitation. Without validity, research can't generate the intended knowledge, produce any benefit, and justify exposing subjects to burdens or risks. c. Expertise for Evaluation: Scientific and statistical knowledge; knowledge of condition and population to assess feasibility.

McCormick

-The Vatican document must be studied carefully, because the issues are very important (family, marriage, parenthood) - Catholic position is an ongoing reflection, and therefore the words are not set in stone - Congregation is rightly worried about the dehumanizing potential of technology, but is slightly biased against tech; Rather than domination by technology, why can't we interpret it as "service and aid" -Vatican argues that children must be conceived out of love, and then state child cannot be conceived by medical/biological techniques—this is a non-sequitur-illogical flow ; sex is not the only loving act in a marriage -An act "deprived of proper perfection" is not necessarily morally wrong---case in point: congregation itself allows interventions to assist in conjugal act

Cahill

-basic message of the Vatican statement: There is experience-based, cross-cultural connection among the genetic parenthood, social parenthood, and commitment to one's partner—so called "variables of reproduction" -American tendency to view moral obligations in terms of pragmatic contracts has been a drawback. -If we justify natural obligations from de facto relations to others, donor methods of reproduction are morally questionable *adoption is different because it doesn't involve the deliberate creation of an embryo when parents have no intention of caring for the child - criticizes Vatican statement for failing to ground teachings on sex, love, and parenthood in the actual experiences of married parents - claims that it fails to uphold social justice and address issues of health care justice and equality for women

• How would different ethical principles apply to the above discussions?

1. Beneficience: can you call it beneficience when you do not really know if the treatement will be successful? 2. Nonmaleficience: some of the research can cause harm is there enough good to justify the harm? 3. Justice: is it really fair? For instance the prisoners and children is it really fair to them when voluntary informed consent is questionable. 4. Respect: respect for patients in emergency treatment and decisionally impaired subjects?

Requirement 3

3. Fair Subject Selection-scientific objectives not vulnerability or privilege, and the potential for and distribution of risks and benefits, should determine communities selected as study sites and the inclusion criteria for individual subjects. a. Explanation: Requires that the scientific goals of the study be the primary basis for determining the groups and individuals that will be recruited and enrolled. Selection of subjects so that stigmatized and vulnerable individuals are not targeted for risky research and the rich and socially powerful not favored for potentially beneficial research. b. Justifying Ethical Values: Justice-equals should be treated similarly and that both the benefits and burdens generated by social cooperation and activities such as clinical research should be distributed fairly. c. Expertise for Evaluation: Scientific knowledge; ethical and legal knowledge

Requirement 4

4. Favorable Risk-benefit Ratio a. Explanation: Clinical research can be justified only if 3 conditions are fulfilled: 1) risks must be minimized 2) potential benefits enhanced, and 3) the potential benefits to individuals and knowledge gained for society must outweigh the risks. b. Justifying Ethical Values: Nonmaleficence (need to reasonably reduce the risks associated with research), beneficence (this translates into the need to enhance the potential benefits of the research for both individual subjects and society), and non-exploitation (ensures that the benefits outweigh the risks). c. Expertise for Evaluation: Scientific knowledge, citizen's understanding of social values.

Adult stem cells

Adult Stem Cells: Stem cells that can be derived from different parts of the body, and depending on where they were from, have different properties They exist in several different tissues including bone marrow, blood and the brain Using these cells is not as controversial as the use of embryonic stem cells due to the fact that they are derived from adult tissue samples

Pellegrino on the Catholic perspective;

Against using stem cells from aborted fetuses or the destruction of human cells at the blastocyst stage because they actively destroy life. Human life is a continuum from conception until death. No stage is just a means to an end, our "degrees" of what counts as a human are arbitrary and have no real biological basis, and our current norms for humanity can change with social norms, putting the "most vulnerable" in danger (fetuses, mentally ill). Abortion is inherently wrong so even if embryos will be destroyed anyway (which Pellegrino argues is not certain) and parents give consent for research, it's still a violation of life. Using federal funds imposes a burden on Catholics because they are being forced to be complicit in abortion. Moral issues aside, it would be hard to allow for stem cell research sing some form of fetal embryos while still banning aborted fetuses or blastocysts because the temptation to use them would always be there and review boards could have conflicts of interest. Recommends not using any fetal stem cells and finding new alternatives, like cells from adults, that will work.

• Describe how Emanuel & Wertheimer would allocate influenza vaccine in a pandemic & their reasons.

Allocating the influenza vaccine in a pandemic (Emanuel and Wertheimer) - The investment refinement combined with the public-order principle (IRPOP) should be utilized as a pandemic response measure for the allocation of influenza vaccines. - Investment refinement: gives priority to people between early adolescence and middle on the age on the basis of the amount the person invested in his/her life balanced by the amount left to live. (ex: 20-year-olds would have priority over 2-year-olds because 20-year-olds have more developed interests, hopes, and plans but have not had the time/opportunity to realize them yet)

Embryonic Stem cells

Embryonic Stem Cells: Derived from embryos Most are derived from embryos that develop from eggs that have been fertilized in vitro They are donated for research purposes with informed consent from the donors They are not derived from eggs fertilized in a womans' body They are pluripotent cells

McCormick

He thinks that the Vatican is rightly worried about the dehumanizing potential of technology, but he does think that this makes them vulnerable to the accusation of an anti-technology bias. He also believes that it is unworthy to replace sexual intercourse in any way, but he refutes the Vatican's point that sexual intercourse is the only act of love. He believes that IVF and ET can be an act of love as well and he says although these may be "deprived of its proper perfection," they are not necessarily morally wrong.

Islamic

Islamic • The use of stem cells derived from aborted fetuses is morally similar to the use of cadaveric organs for transplantation, and therefore is permissible • Moral status of embryo/fetus is similar to that of the Jewish tradition; its development is a journey and full moral status is given at the moment of "ensoulment" • Islamic text does not say specifically when ensoulment occurs however • Generally accepted law is that the fetus has full moral status at the time when palpable movements can be felt (around the 4th month), and abortion after which is considered homicide • Since Koran does not say when ensoulment occurs, the decision on using embryonic stem cells can be left up to man • The acquiring and use of embryonic stem cells can be considered an act of faith that the ultimate will of God; that the stem cell procedure will ultimately be beneficial to overall human health

• Explain the position taken by the President's Council on Bioethics with regard to reproductive and research cloning and the reasons the Council offered for its positions. MAJORITY

Majority Recommendation (10 members): ban on cloning to produce children and four year moratorium on cloning for biomedical research • unanimous and strong ethical verdict against cloning to produce children • defense for moratorium: o allow us to seek moral consensus o affords time for scientific evidence, now sorely lacking, to be gathered o promote a fuller and better informed public debate o show respect for deep moral concerns of the many Americans against it o signals a high regard to value of biomedical research (opposed to lasting ban) o reaffirms principle that science can progress while upholding community's moral norms

Explain the position taken by the President's Council on Bioethics with regard to reproductive and research cloning and the reasons the Council offered for its positions. MINORITY

Minority Recommendation (7 members): ban on cloning to produce children, with regulation of the use of cloned embryos for biomedical research • unanimous and strong ethical verdict against cloning to produce children • defense for cloning for biomedical research and permitting it to proceed without substantial delay:

Elements of double effect

Action in itself must be good or at least indifferent Agent must ony intend good effect but may forsee evil effect Evil cant be means to good Say we go spelunking in cave and it turns out a fat person gets wedged in the only way into and out of the cave, we will die if we stay in the cave, so now we have to use dynamite to blast our companion out of that hole, sacrificing one for benefit of many, this does not fall under rule of double effect In that case persons death was a means to end, BAD for catholic Scenario2; someone in back of auditorium discovers a bomb in a suitcase rushes out to lawn and throws it out, notices a picnicer outside, but have 5 seconds to throw out the bomb to save the whole auditorium; this is double effect Main action is throwing the bomb out not directly killing person Phoenix case 2009 o Pregnant with 5th child, really ill, had heart failure, would probably die without abortion o But she was at a catholic hospital o Official position was to let mother and child both die, not realy practical

• Lauritzen argues that AI isn't working and we must go to IVF, AI w/ donor sperm, or adoption

women will soon be seen only as breeders and reproductive prostitution will emerge men will be in control He had procedures done and the loss of intimacy and fertility specialists taking over the sex life is straining his relationship Feminists say • NRTS(New Reproductive Technologies) are coercive - just the offer is coercive and it's a threat to women's reproductive choices • Lead to dismemberment of motherhood • Treat women and children as products • Open the door to widespread genetic engineering Despite these arguments, he does believe NRTs are useful; he just wants society to be prudent

Confidentiality/privacy

- An issue of who is to control the dissemination of certain information - In the pledge of confidentiality typically found in codes of professional ethics, the professional promises not to reveal information about the patient and/or client without consent - Ethical questions are acute when protecting the confidence of a client and/or patient would result in general social harm or infringements of the rights of other parties - State or condition of limited access to a person

Sandel: "What's Wrong with Enhancement"

- He explains enhancement and genetic engineering are objectionable for reasons that go beyond safety, fairness, and embryos - These technologies pose a threat to human dignity, or point us toward a post-human existence, but how? - Possibly because our capacity to act freely for ourselves, by our own efforts, and to consider ourselves responsible is threatened by these technologies - as the role of enhancement increases, our admiration for the achievement fades - These technologies represent a kind of hyper-agency to serve our purposes and satisfy our desires - the problem is the drive to mastery; this drive misses and destroys an appreciation of the gifted character of human powers and achievements - Enhancement is troubling because it represents the triumph in our time of willfulness over giftedness, of dominion over reverence, of molding over hebolding

Congregation for the Doctrine of the Faith (SCDF)

-human life is sacred because it involves the collaboration of God -from the time the ovum is fertilized, there is new life -prenatal diagnosis opposes moral law when it is done with possibility of abortion -experimentation on embryos where it is not explicitly therapeutic is illicit; applies for in vitro embryos too -cryopreservation is wrong; exposing human to risks of death or harm -techniques of in vitro fertilization violate rights of the embryo and the right of every person to be born within marriage; -attempts to change embryo violates personal dignity of the human being -children must be the fruit of marriage because it is an image of parent love, "permanent sign of union"-therefore surrogate motherhood and IVF are not morally licit -Suffering of infertile couples is one that everyone must understand—marriage does not automatically confer right to a child; a child is a "supreme gift"

• List the elements of informed consent (B&C) & list and explain the standards of disclosure (B&C) Elements of informed consent:

. Threshold elements (preconditions) 1. Competence 2. Voluntariness II. Tnformation elements 3. Disclosure (of material information) 4. Recommendation (of a plan) 5. Understanding (of 3 and 4) III. Consent elements 6. Decision (in favor of a plan) 7. Authorization (of the chosen plan) Standards of Disclosure: 1. Those facts or descriptions that patients or subjects usually consider material in deciding whether to refuse or consent to the proposed intervention or research 2. Information that professional believes to be material 3. The professional's recommendation 4. The purpose of seeking consent 5. The nature and limits of consent as an act of authorization

• List and explain Emanuel et al's ethical requirements for clinical research.

. Value- evaluation of a treatment, intervention, or theory that will improve health & well-being or increase knowledge, enhancements of health or knowledge must be derived from research 2. Scientific validity- use of accepted scientific principles & methods, including statistical techniques to produce reliable and valid data 3. Fair subject selection- scientific objectives, not vulnerability or privilege, & the potential for & distribution of risks & benefits, should determine communities selected as a study site f and the inclusion criteria for individual subjects 4. Favorable risk-benefit ratio - minimize risks, enhance potential benefits, risks to subject are proportionate to the benefits to the subject & society 5. Independent review- review of the design of the research trial, its proposed subject population, & risk-benefit ratio by individuals unaffiliated w/ research 6. Informed consent- must provide info to subjects about purpose of the research, its procedures, potential risks, benefits & alternatives so that the individual understands the info and can them make a voluntary decision about whether to enroll or continue to participate 7. Respect for enrolled subjects- have respect by: permitting withdrawal from research, protecting privacy through confidentiality, informing subject of newly discovered risks or benefits, inform subjects of the results of clinical research, maintain the welfare of subjects

• Identify and discuss the 4 key ethical issues in pandemic influenza raised by Stand on Guard for Thee

1. Health workers' duty to provide care during a communicable disease outbreak • Workers should know ahead of time their duties and responsibilities during an outbreak • Their safety should be protected at all times • Insurance and death benefits should be provided to all workers' who are adversely affected while performing their duties 2. Restricting liberty in the interest of public health by measures such as quarantine • Protocol should be developed for the implementation of restrictive measures that balance individual liberties with protection of the public from harm • The public should be aware of the rationale behind the restrictive measures, the benefits of compliance and the consequences of noncompliance. • Plans should be made to protect against stigmatization and to safeguard the privacy of individuals and communities affected by restrictive measures • Measures to guarantee provisions and support services to those affected by restrictive measures should be implemented into the pandemic plans. 3. Priority setting, including the allocation of scarce resources, such as vaccines and antiviral medicines • A clear rationale of who gets priority to health care services during a pandemic should be publicized. • Stakeholders (staff, the public) should be included in determining what criteria to make resource allocation decisions. • Formal mechanisms should be in place for stakeholders to present new ideas, to appeal or raise concerns about allocation decisions and to resolve conflicts 4. Global governance implications, such as travel advisories • The WHO (World Health Organization) should be aware of the impact that travel recommendations will have on affected countries • The developed world should continue to invest in improving the overall public health infrastructure in developing countries

• Explain the four major theories of justice and their relevance for access to health care. (Arras & B&C)

1. Libertarianism • Autonomy- based • No positive rights: nobody has a duty to provide healthcare • Healthcare should be treated like any other good on the free market. • Puts a price on life essentially • Emphasizes rights to social and economic liberty 2. Utilitarianism • Seeks the greatest happiness for everyone; seeks to maximize the well being of the world. • Benefits to individual and society • There is a right to healthcare, but there are limits. Example: a man wanting healthcare to extend his life for only 2 more months when the healthcare costs millions. 3. Norman Daniels' theory of equal opportunity aka Just Health Care • Justice as fairness • Emphasizes equal access to certain goods that are valued in society...therefore involving trade offs between basic goods 4. Communitarian theory • Emphasizes principles of justice that evolve through traditions in a community • Goods are socially and historically defined; healthcare is special because of the interpersonal significance of access to healthcare • Lack of access to healthcare is not simply dangerous, it is degrading to our society

• Distinguish among the special classes of research subjects and the relevant ethical considerations for each.

1. Prisoners: voluntary informed consent? Fair to use in nontherapeutic research? 2. Children: cannot give valid consent so can parents enroll them? Assent? 3. Patients in Emergency Treatment: is community consent enough? 4. Decisionally- impaired subjects: psychiatric research ok? 5. Citizens of other countries: exploitation and consent and imperialistic imposition concerns 6. Embryos: stem cell research? 7. Animals: moral and social conflicts

Requirement 1

1. Social or Scientific Value (Utility)-enhancements of health or knowledge must be derived from the research a. Explanation: Clinical research must be valuable, meaning that it evaluates a diagnostic or therapeutic intervention that could lead to improvements in health or well-being. b. Justifying Ethical Values: Responsible use of finite resources (research resources are limited) and avoidance of exploitation (avoid exposing human subjects to potential harms without possible social or scientific benefit). c. Expertise for Evaluation: Scientific knowledge and citizen's understanding of social priorities.

requirement 5

5. Independent Review-unaffiliated individuals must reviews the research and approve, amend, or terminate it. a. Explanation: Independent review by individuals unaffiliated with the clinical research helps minimize the potential impact of conflicts of interests that might lead even well-intentioned investigators to use questionable scientific methods in order for their research to thrive. b. Justifying Ethical Values: Social accountability-independent review assures members of society that people who enroll in trials will be treated ethically and that some segments of society will not benefit from the misuse of other human beings. Also ensures people that if they enroll, the trial is ethically designed and risk-benefit ration is favorable. c. Expertise for Evaluation: Intellectual, financial, and otherwise independent researchers not affiliated with the research; scientific and ethical knowledge

requirement 6

6. Informed Consent-individuals should be informed about the research and provide their voluntary consent. a. Explanation: Ensures that individuals control whether or not they enroll in clinical research and participate only when the research is consistent with their values, interests, and preferences. Individuals must be accurately informed of the purpose, methods, risks, benefits, and alternatives to research and make a voluntary and un-coerced decision whether to participate. b. Justifying Ethical Values: Respect for persons and their autonomous decisions; respect for non-autonomous (empowering a proxy decision maker to decide for the non-autonomous person (substituted judgment standard)). c. Expertise for Evaluation: Scientific knowledge; ethical and legal knowledge

requirement 7

7. Respect for Potential and Enrolled Subjects-subjects should have their privacy protected, the opportunity to withdraw, and their well-being monitored. a. Explanation: Respect for subjects by: 1) Permitting withdrawal from the research. 2) Protecting privacy through confidentiality. 3) Informing subjects of newly discovered risk or benefits. 4) Informing subjects of results of clinical research. 5) Maintaining welfare of subjects. b. Justifying Ethical Values: Beneficence, nonmaleficence, and respect for subject's autonomy. Allowing subjects to withdraw and providing them additional info learned from the research are key aspects of respecting autonomy. Protecting confidentiality and monitoring well-being are motivated by respect for person, beneficence, and nonmaleficence. c. Expertise for Evaluation: Scientific knowledge; ethical and legal knowledge, knowledge of particular subject population. Conclusions: • These requirements ensure that clinical research is socially valuable and subjects are not exploited, that subjects are treated fairly and with respect, and that their interests be protected. • Also help guide researchers in their assessments of individual clinical research protocols.

Jewish

: • Human bodies are on loan from God, thus God imposes conditions of use for them • Required that humans seek to preserve life and health • Tradition accepts both natural and artificial methods for overcoming illness • All humans are created in the image of God, and should be valued and respected as such • Genetic materials outside the uterus have no legal status under Jewish law, thus they have no moral status and can be used to obtain stem cells for research • Therefore, stem cells can be obtain in morally permissible ways, making the technology itself morally neutral • It is God's will that life be preserved and suffering limited under all moral means necessary, thus we have a duty to proceed with stem cell research for its potential to alleviate human suffering • The technology must only be used for curing, however, not for enhancement or any other means that may be construed as eugenics

• "The Deadly Deception" [Clemons VHS7946]

A documentary on an unethical behavior in a government sponsored study begun in 1932, in which 400 African American men in Macon County were left untreated for syphilis. The Public Health Service working with the Tuskegee Institute enrolled the men in the study by using social institutions, like schools and churches. Initially, the program was dedicated to the eradication of syphillis, but the government ran of resources to provide treatments to all of the patients. Soon, the men became subjects, rather than patients. They were deceived into believing that they were receiving treatment, when really they were receiving placebos. In 1972, the study was ended, but the men of Macon County received minimal compensation. The scientific community was aware of the true nature of the study while it was going on. The study brings up the ethical issues of informed consent, deception, coercion, as well as physical and psychological harm to subjects involved, as seen in interviews with Herman Shaw and Charles Pollard.

What Makes Clinical Research Ethical? By: Emanuel, Wendler, and Grady •

According to the article, obtaining informed consent does not ensure ethical research and therefore it is imperative to have a systemic and coherent framework for evaluating clinical studies that incorporates all relevant ethical considerations. • Belief that clinical research as the potential for exploitation of human subjects and ethical requirements are necessary in order to minimize the possibility of exploitation by ensuring that research subjects are not merely used but are treated with respect while they contribute to the social good. • The article outlines 7 requirements that are intended to elucidate the ethical standards specific for clinical research and assume general clinical obligations.

• How would different ethical principles apply to the above discussions?

Autonomy: The patients with TB, their autonomy needs to be protected and violated minimally if at all. If DOT is mandated then their autonomy will obviously be compromised but it must not be neglected totally and measures need to be taken to protect their privacy and rights as much as possible. In a pandemic people should be told what is going on and kept fully informed. While they may not be allowed to make their own choices they still have the right to be informed. Health care workers during a pandemic, are they required to work and perform their assigned duties or can they back out, out of fear for their own health or their families. Do they have an autonomous choice in this matter? Beneficence/Nonmaleficence: Mandating DOT on some patients is for their own good so they can cure the TB and not spread it to other people. In a pandemic quarantining infected people from others is for their own good. Preventing infected people from travelling prevents them from hurting others by spreading the disease. Utility: In a pandemic quarantining some to save the rest of the community produces hopefully more good over bad effects. Allocating medications to the most in need in order to save the greatest number of people possible.

Behar: "Will Genetics Destroy Sports?" -

Behar: "Will Genetics Destroy Sports?" - Genetic modifications becomes an indistinguishable element of DNA in targeted muscles; - The only way to prove that someone has experimented with gene doping is to biopsy a suspicious muscle and look for signs of DNA tampering - Most athletes will object to having bits of flesh sliced from their own muscles - Therefore, lack of detection makes gene doping attractive to athletes - Gene therapy doesn't provide information on possible side effects - "Introducing foreign genes into muscles, is going to produce changes in the way muscles secrete things into the blood and into the urine." - The misuse of gene doping in sports is more clearly defined than its proper use - The boundaries of healing and enhancement blur when physicians begin curing athletic injuries with gene therapy - fuzzy line between what is medically justifiable treatment of injuries and what is performance enhancement

• Explain Lauritzen's feminist critique of reproductive technologies

Believes there are dangers in pursuit of reproductive technologies such as IVF, artificial insemination with donor sperm, surrogate motherhood by expanding use in ways other than as a last resort -4 objects to the use of NRTs (new reproductive technologies): 1) They are coercive -the offer of hope to become a mother is a coercive offer because to choose to be childless is socially disapproved and stigmatized -technologies, in the future, could be established as "the norm"-become coercive- 2) Lead to dismemberment of motherhood - Motherhood becomes an abstract idea when one may have a genetic mother, a gestational mother, or social mother -NRTs take away from women major source of power and identity by eliminating procreation 3) Treat women and children as products -language of reproductive medicine, related to IVF and other NRT is dehumanizing-eggs harvested; cervical mucuous "hostile" -Technology treats people as products-ex) surrogate industry and sperm banks, women paying for embryos, being paid for eggs-children may inevitably be bought and sold -Once we separate procreation from intercourse, it is difficult not to treat procreation "as the production of an object to which one has a right as the producer" 4) Open route to genetic engineering -Technologies make it easier for genetic manipulation -Difficult to distinguish attempts at eugenics and reducing human suffering through genetic screening, manipulation

• Highlight the different religious perspectives on reproductive and research cloning.

Catholics and some Orthodox Jews oppose the use of reproductive technologies on the basis that they are, "illicit and in opposition to the dignity of procreation and of the conjugal union" (Congregation). However, there is a Biblical duty to procreate, and therefore logic seems to blame infertile parents for being such. The Congregation only wants procreation on their own terms and forcibly removes the possibility of life-giving technologies from devout Catholics. The Jewish faith, as evaluated by Mackler, is more understanding about this issue and sees reproductive technologies as acceptable in a last resort situation. According to Mackler, procedures like IVF provide "needed assistance to the natural process in a way that can manifest respect for persons and fulfill the responsibility... [of a] partnership with God." This is a very different interpretation than the one given by the Congregation, which is essentially filled with non-sequiturs that seek to diminish the moral status and legitimacy of a baby produced by such artificial measures. A partnership with God is not emphasized in Catholicism.

Farley on the Roman Catholic perspective:

Consents that there are many different Catholic perspectives on stem cell research. Humans are "co creators" with God and have and humans have a duty to care for others and to try and avoid harm, which helps make us all equal. However, there is disagreement about stem cell research, the status of the embryo, and how the consequences of science and research. Natural law is not a strict law, but more of a guideline for decision making. Those who feel that the embryo is a full person are generally against embryonic stem cell research because it destroys life, and may encourage abortions. However, many Catholics do not agree that the fetus is a person at its earliest stages ("conception is a process, not a moment") so abortion can be OK with proper restrictions. This disagreement should create a discussion on abortion, given the new technologies and conclusions of science. A compromise can be made, one that takes into account both new science, and traditional thought and belief. Is for stem cell research.

• Explain arguments for and against directly observed therapy in controlling TB (in B&C)

DOT (Directly observed therapy) Critics of mandatory DOT argue that a majority of patients actually comply with treatment so it would be "wasteful, inefficient, and gratuitously annoying" to make DOT mandatory for all TB patients. For some patients DOT is very intrusive on their privacy and autonomy. On the other hand not implementing DOT could cause the further spread of TB, especially the multi-drug resistant forms which in turn would cause treatment costs to rise. The solution that is presented is that priority should be given to policies that protect privacy and freedom of choice. However coercive measures such as DOT may be used to protect public health as long as priority is given to the least restrictive and least intrusive measures.

Dorff on the Jewish perspective:

Dorff's analysis of stem cell research comes from both theology and law. Our bodies are not our own, but are gifts from God, who places certain obligations on them, including the stipulation that me must work to preserve ourselves. Natural and manmade treatments are OK because the Jewish tradition calls on us to work to heal ourselves. All humans are created in God's image and should be respected as such. We do not have God's omnipotence so we need to be cautious in our efforts not to do more harm than good in our actions. According to the Jewish tradition, abortion is only acceptable if it was done for legitimate reasons. The woman can't abort just because she does not want the baby because that wold be like amputating her thigh for no reason. The fetus is not a full person, so if the fetus puts the health of the mother in danger, or will suffer from a terminable disease, abortion is acceptable, and may even be mandatory. If the fetus was aborted legitimately, it is OK to use the fetus in research to help others (does not have to be buried for god because it's not a person). As long as gamete cells are not in the womb, they will never be full fledged persons so they can be used for legitimate research. The technology for stem cell research is morally neutral and requires a cost benefit analysis. Health care is a communal responsibility and the government has the right to demand that the companies they fund work to help those who cannot afford health care. Also, research for healing is good, but research for enhancement should be approached with caution. Dorff recommends funding stem cell research for its good purposes, ensuring access by al Americans, and limiting its uses for enhancement.

• "A Heart for Jo?" [Clemons VHS 9335] Note: any question about videos will involve some choice (not necessarily between videos but at least between videos and some other topic).

Follows the struggles of 13-year-old Joanne who needs a heart and lung transplant. She is rejected by many clinics because she has Down's syndrome. Her mother writes letters to anyone who she thinks might be able to help and visits several clinics in England. At one clinic, a medical professional tells Jo's mother that the clinic will not be able to help Jo because there is a scarcity of hearts and lungs and these few organs go to healthy patients. According to her, Down's Syndrome patients have a lower chance of surviving the operation and following post-operation requirements. But another doctor says that it has not been shown that Down's syndrome patients have lower survival rates than other patients. Joanne's mother goes to the US to visit a Down's syndrome adult who successfully underwent the procedure that Jo needs. At the end of the movie, Jo is still left hoping and waiting for a heart.

• Explain the difference between formal and material principles of justice.

Formal principle of justice: • Equals must be treated equally • This theory lacks substance because it leaves no characteristics to judge who is equal Material principle of justice: • Equals must be treated equally • To determine equality among individuals: principle of distributing based on fundamental need (without something, a person will be harmed in a fundamental way), free-market distribution, equal shares, or according to each person's effort, contribution, or merit.

Meilander on the Protestant perspective:

Hard to separate fetus' role in research from the abortion debate. Believes that the fetus is one of the most disadvantaged and weakest members of society, and any good society should care for its weakest members. Part of what makes us human is our history, and fetuses have a history to them, even if they are not aware of it. Humans are not raw material and by denying ourselves the ability to use something "easy" like embryonic stem cells, we awake our imaginations to new and creative alternatives. Against using aborted fetal stem cells because it could encourage abortions and it's like "the strong using the weak". No matter what, we should be honest with people and not use euphemisms so we can truly think about who we are and who we ant to be.

"Who's My Mommy?" [Clemons VHS 13144]

In this movie, a couple decided that they wanted to have a child but were not able to do so. In response, they hired a surrogate to carry a child for them. It was later explained that the sperm and eggs used were from two different donors. The hospital then continued to ask the husband and wife what they wished to do with the unused embryos. They had specified initially, or so they thought, that the embryos should be destroyed. However, they later found out that they had stated that the embryos could be donated for further use in the future. After this process, the husband then indicated that he would like to file for a divorce. Perhaps out of frustration of this child not truly being his by biological means, the father chose to find a way out. In a struggle to support the child, the wife finds her self in a dead end. She needs child support, ends up being a single mother until he initial surrogate expresses that the child is in fact hers. Therefore, there is a legal and moral question of is the child the woman carrying the body, those who hired the surrogate as well as the true identity and belonging of the child to be at hand. This leaves the question of who really is my mommy? It has been stated that the woman who hired the surrogate was given the child as her own.

• "The Lynchburg Story" [Clemons VHS 7864]

In this movie, legal medical practitioners practiced forced sterilizations on what they deemed "feeble minded persons." The objective of these individuals was to purify the white race to the best of their ability. Their definition of "feeble minded" resembled people of lower nature and class. For example, women who had committed adultery or individuals who had been jailed for various reasons were forcefully sterilized in states such as California and Virginia. In fact, most of the inmates were held within the city of Lynchburg before they were sterilized. Throughout the movie, in an effort of eugenics, various people who were subjected to these conditions and ripped away from their families explain the solitary confinement as well as abuse. This played a role of eugenics to international countries such as Germany. However, it became a true realization of the abuse that Americans were going through and it shocked the nation. 5 principles are questioned and analyzed in this movie.

Pluripotent Stem cells

Pluripotent: "True" stem cells The potential to differentiate into almost any cell in the body Alone - these kind of cells - cannot develop into a fetal or adult animal because they lack the potential to contribute to extra-embryonic tissues (i.e. placenta)

On reproductive cloning...

Principle of nonmaleficence: For those who believe that embryos are human life/potential human life and killing them is murder, this would be a violation of the principle of nonmaleficence. Principle of utility: research could provide medical benefits for greater good of society (potentially more pro's than con's if regulated correctly) Principle of justice: could be a concern if treatments became available in the future; who would have access to them and who wouldn't? Principle of Beneficence: It is believed that human stem cells from cloned embryos can provide treatments for a variety of diseases and illnesses that today are incurable. Thus this research could potentially benefit others.

Protestant

Protestant: • Embryo can be viewed as a very weak and disadvantaged individual, and it is Christian duty to care and provide for the weak • It is still not acceptable to exert control over a living human organism for its use in research, even if the results have great healing potential • Cannot easily separate the issues of abortion and methods of obtaining stem cells • Cannot support any research, no matter how promising, that encourages abortions • Due to the controversy of obtaining stem cells from embryos or aborted fetuses, if research is to continue, researchers must challenge themselves to find acceptable alternatives methods of obtaining stem cells • Similar concerns to that of Roman Catholic concerning respect for the dignity and value of the human embryo • These viewpoints are not uniform throughout each protestant church

Rhoden's arguments

Rhoden's article focuses on nonconsensual cesareans - now doctors can get a court order for the protection of a fetus to perform a c-section against a woman's wishes Mandatory rescue of the fetus requires an imposition upon the mother that goes far beyond what our society has imposed, or should impose, on others...violates woman's autonomy Must consider two cases a) violence on the mother. Are you going to strap her down and sedate her in order to perform the surgery? b) What happens if the woman is killed during the surgery? Who becomes responsible for putting her in that situation? Surely the court would like to avoid such a controversy Violated roe v. wade ruling of privacy to the woman - court cannot force women to go through a potentially harmful surgery if she does not want to As for interpersonal risk-benefit comparisons, it must be noted that there is no general duty to rescues in the United States. Rhoden points to a case where a man was dying of anemia and wished the court to mandate that his cousin save him by bone marrow donation. The court, while believing the cousin to have morally reprehensible considerations, could not imagine mandating that another person give up something that is a part of them for the sake of another. They would be "sinking their teeth" into that individual Also concerns with the fact that the doctors are not always right sometimes their diagnosis is wrong and normal delivery is successful

Rhoden

Rhoden, "Cesareans and Samaritans": She defends that courts should not order competent women to have C-sections, despite the potential tragic consequences to the fetus. Civil libertarian position: 1. Impose an unparalleled intrusion upon pregnant women 2. Undermine the teachings of informed consent 3. Goes against women's choices during obstetrical care. She outlines reasons why C-sections are justified and then argues against them: ABORTION LAW- But the fact that states have an interest in preventing certain consequences does not mean that any and all action to prevent such consequences is constitutional. Roe v. Wade allows the state to protect the fetus but she argues this not applicable. The woman's health should come first and her rights should not be compromised. THE CHILD NEGLECT/ FETAL NEGLECT ANALOGY- seen as a harmful choice the woman is making toward the baby. Analogy is too simplistic- there are no legally enforceable duties to fetuses. THE STATE"S INTEREST IN THE WELL-BEING OF THIRD PARTIES- there is no general duty to rescue and certainly no duty to undertake risky rescues. "good Samaritans" NOT "splendid Samaritans" Rhoden makes analogy to bone marrow transplants and C-sections. The court orders someone to undergo surgery to save another. Pregnant women have the right to be cowards and afraid of a surgery especially under emergency situations. Religious beliefs of the woman should be taken into account as well. Subjective ordering of the court where they cannot possibly understand. 2 scenarios: Violence involved if a woman objects to the surgery and if the woman dies who is morally to blame (the court?)

Sachedina on the Islamic perspective:

Shari'a (Islamic law) treats cells from aborted fetuses as similar to cadaver donation and therefore it is acceptable to use them to save lives. No real answer as to status of embryo, but it is safe to assume that the majority of Muslims would approve of a therapy from stem cells if it helped save lives. The Islamic ruling (fatwa) has changed overtime based on the current science and beliefs of the time. The Koran says that a fetus becomes a person at the later stages of pregnancy and distinguishes between a moral and biological person. Early Shari'a law says that a fetus is a person when it moves in the womb, and when it develops a stomach, around the fourth month. Islamic tradition allows for justifiable abortion until the end of the fourth month. Some believe that life begins at conception and should be protected. Once the fetus is alive, aggression towards it is like aggression towards a full fledged person. Different Islamic countris follow different customs. But all Muslims would likely agree that: the Koran and tradition say that potential life begins at the later stages of pregnancy, the fetus only gets moral status when it makes voluntary motion, the absence of any clear definition allows for people to come up with their own definitions for biological and moral persons. God's will is suprme and huans can only use stem cell research if it is done to improve life. While all of these beliefs argue that life should be respected, they differ in their extent that the fetus should be protected. The Catholic and Protestant perspective is that life begins at conception and the fetuses should be respected, while the Jewish, new Catholic, and Islamic perspectives grant more leeway in terms of research. The Islamic perspectives gives people more say in their beliefs. All of these perspectives acknowledge that research for healing, not enhancement is important.

Annas' perspective on fetal neglect laws.

Stating that "disobeying medical advice" is a crime is silly and dangerous. Silly because advice is advice, not the law. Dangerous because the term "advice" is vague and could mean just about anything Focuses on the fact that the court cannot charge a pregnant woman with child neglect or "fetus neglect" How can you favor the fetus over the mother? To do so would reduce mothers to individuals capable of serving only one function: childbearing. They would be nothing more than containers Also a woman has her own autonomy and to force her to not do certain things would be violating her autonomy If the court rules for fetus neglect then they are placing greater priority in the unborn fetus then in the pregnant women instead of acknowledging that doing something to one with effect the other since they are inseparable until born Attempts to define fetal neglect, and to establish a prenatal police force to protect fetuses from their mothers, are steps backwards in terms of both women's rights and fetal protection. Women's rights will only be protected when we treat women equally. Annas "Pregnant Women as Fetal Containers"- when is it legally acceptable to treat a pregnant woman as a container, while treating the welfare of the fetus she contains as more significant than hers. Monson in CA 1986 charged for not listening to her doctor and getting to the hospital soon enough. She sees defining fetal neglect laws as steps backward in terms of both women's rights and fetal protection. Women's rights will be fostered when we treat women equally. For fetuses we need to protect by enhancing the status of women by fostering reasonable pay for the work they do, equal employment opportunities, and providing a reasonable social safety net, quality prenatal care, and day care services. The state should protect the welfare of the pregnant woman- not by oppressing them.

Council's Policy Recommendations: The position of the Council on reproductive cloning was unanimously in opposition

The Council majority recommends "a ban on cloning-to-produce-children combined with a four-year moratorium on cloning-for-biomedical-research. We also call for a federal review of current and projected practices of human embryo research, pre-implantation genetic diagnosis, genetic modification of human embryos and gametes, and related matters, with a view to recommending and shaping ethically sound policies for the entire field." o A moratorium would allow time to evaluate cloning in larger context of research and technology, as well as enable a more democratic approach to base the decision. o It would also allow time for government to establish an effective system of regulation and time to seek moral consensus o Reinforces the need to proceed with caution o Gives Council time to educate & inform the public, and to open the issue up for discussion

Council takes a broader perspective...

The Council takes a broader perspective on the issue of cloning rather than just focusing on its direct impacts - that is, it is concerned with informing the public as well as policymakers of the "larger human, technological, and ethical contexts" of cloning. Members of the Council vary greatly in their position on cloning, and this diversity is celebrated. It first seeks to define the terms of cloning fairly and accurately, then to outline the ethics of cloning with the purpose of producing children. Though it takes the same position as the NBAC and NAS in stating that cloning-to-produce-children is unethical, it presents the broader ethical context behind its position:

• "Discussions in Bioethics" ("A Critical Choice") [Clemons VHS 4663]

The cost of high-risk organ transplants and the allocation of scarce medical resources is considered when a child with a 40% chance of survival is in need of a liver transplant. Raises questions about how a hospital administration should allocate limited funds.

• Explain the reasons for and against genetic testing, as well as the distinction between privacy and confidentiality, and how these norms relate to genetic information. (Also discussed under Public Health)

The main argument that is against genetic testing is connected to the idea of the slippery slope argument. If we would be able to test everyone for diseases and gender it might promote sex selection, and abortions of fetuses that have certain diseases because the parents do not believe they are 'perfect' (The need to prevent various forms of genetic discrimination). Another argument against genetic testing could be said to be the idea of genetic information being private, and that not everyone needs to know - even maybe the individual him/herself. Some people would rather not know if they have a terminal genetic disorder, something that mandatory testing would breach. One more could be the lack of access to everyone, these procedures are expensive, and everyone not having the same opportunity to test if they have a genetic defect is against the principle of justice. The main argument for genetic testing could be said to be the idea of being able to screen diseases ahead of time. Some diseases such as Down syndrome are manageable and the death rates from such diseases are not as high compared to other genetic diseases. Allowing the parents to find out if their future child is going to have a terminal illness or have challenges in their lives will allow the parents to become more aware of what they can do. Testing will allow physicians to work on further testing solutions and therapies in order to cure some genetic defects, and catching these defects earlier is much more advantageous for the patient since some treatments might not work that effectively if diagnosed in further stages of the disease.

• Describe President Bush's decision (& its justification) on funding human embryonic stem cell research.

Whether or not to use federal funds for research Reasons against research • States that stem cells can be derived from sources other than embryos • There are moral concerns raised by human embryo stem cell research. Even the most noble ends don't justify the means • Human life is a sacred gift from our Creator. Supporting it may create a culture that devalues life instead of respecting it. • Fetal tissue research also offered great hope for cures and treatment, but it has not met its expectations. Embryonic stem cell research has promise but at a great cost. He isn't sure he wants to take the risk, especially if it doesn't live up to the speculated potential. Decision • Allow federal funding to be used for research on existing stem cell lines. Justification • The decision to kill the embryo has already been made, so it is not immoral to use them. • It allows for the research to progress, but not at the expense of potential life. • Funds could go to the creation of stem cell lines or research on those lines. If they gave funds for the research but not the creation... that would still encourage the creation of lines through private funding. By adding the clause that no federal funding will be given to research using new lines... researchers aren't encouraged to create new lines. Bush does not want to indirectly support the creation of new (more) lines by supporting the research using them. • They are giving funding to alternatives that don't involve the same moral dilemma

• What is the concept of triage? How does it illuminate health care distribution?

o (B&C 279) Triage: Medical Utility and Narrow Social Utility o According to B & C, triage is a process of developing and using criteria for prioritization. In medicine, triage usually occurs during emergency situations in which injured persons have been sorted for medical attention according to their needs and prospects in order to use medical resources as effectively and as efficiently as possible. o For example, disaster victims sorted by medical need and prospects treating those with major injuries that need immediate attention to save their lives first, then the injured that aren't facing immediate danger, then minor injuries, then those who no treatment would be effective etc. (Note that treatments/resources not used on patients who won't benefit from them) o Appeals to medical utility rather than social utility; no judgments about individuals' comparative social worth. o Although some judgments of social utility come into play when persons possess specific qualities and skills that are essential to the community's immediate protection (ex: medical personnel with minor injuries that can save others) o Illumination of health care distribution: appeals to both justice and utility; medical utility is roughly equal for eligible patients; narrow considerations for social utility for individuals who are essential for the immediate protection of the community.

The Council minority recommends a ban on cloning-to-produce-children, with regulation of the use of cloned embryos for biomedical research.

o unique benefits of using stem cells from cloned stem cells could relieve suffering of millions of Americans o would govern cloning for biomedical research through regulatory protections regarding secure handling of embryos, licensing and review of research projects, protection of egg donors, and provision of equal access to benefits.

• Explain the fair opportunity rule and its implications for access to health care.

o Certain properties that have often served, unjustly, as bases of distribution - gender, race, IQ, linguistic accent, ethnicity, national origin, social status. These properties are irrelevant, discriminatory, and based on differences for which the affected individual is not responsible. o Fair-opportunity rule says that no persons should receive social benefits on the basis of undeserved advantageous properties (bc no persons are responsible for having these properties) and that no persons should be denied social benefits on the basis of undeserved disadvantageous properties Properties distributed by the lotteries of social and biological life don't provide grounds for morally acceptable discrimination if people don't have a fair chance to acquire or overcome properties (Rawlsian) To overcome disadvantaging conditions (whether biology or society or whether received through natural lottery or social lottery) that are not deserved, the rule demands compensation for disadvantages. o Implications for access to health care Requires that they receive the benefits needed to ameliorate the unfortunate effects of life's lottery Persons with functional disabilities lack capacity and need health care to reach a higher level of function and have a fair chance in life If they are responsible for their disabilities, they might not be entitled to health care service, but if not responsible, fair-opportunity rule demands they receive that which will help them reduce or overcome unfortunate effects Raises questions to which underserved properties create a right in justice to some form of assistance? Limited resources constrains implementation o this rule (as brought up by Libertarians). Draw a line between disadvantages that are unfortunate and disadvantages that are unfair.

Enhancement interventions

o Enhancement interventions refer to human genetic engineering that seeks to change certain qualities about an individual that are not life-threatening or debilitating. Enhancement interventions are generally less ethically supported because there is no medical need to perform them. The reasons behind these interventions are often to select for or against simple physical characteristics.

o Germ-line interventions refer to types of human genetic engineering that involve the reproductive cells.

o Germ-line interventions refer to types of human genetic engineering that involve the reproductive cells. These changes are passed down to offspring and future generations. This is ethically significant from somatic-cell intervention because the resulting progeny may not feel the same way about the traits that were eliminated or added to their genetic makeup. Though it can be assumed that eliminating certain debilitating diseases would be universally supported by those affected by HGE, changing the reproductive cells in order to obtain or eliminate non-life threatening traits creates ethical concern. People often feel like germ-line intervention is similar to playing god over future children.

Gould on Buck v Bell

o Gould points out that Carrie Buck, her mother, and her daughter were not imbeciles and that they were forcibly sterilized because they came from rough and supposedly shameful backgrounds. Carrie Buck was raped and sent away to have her baby. In this way she was persecuted for supposed sexual immorality and social deviance. The true motivation behind sterilization was to get rid of "the most worthless one-tenth" of their society. More importantly, Gould notes that forced sterilization violates human free will and the basic right to have children which applies to all people including "imbeciles". He also notes that this case helped set the stage for the Holocaust.

Jewish View (Mackler)

o Guiding Values Children are seen as a blessing to their parents and the community and having children represents the fulfillment of a religious responsibility Reverent but active partnership with God in completing the works of creation and improving the world Humans are created in God's image o IVF A medical intervention assisting the natural process of reproduction and enabling the couple to have a child Couples must do their best to prevent any hard from coming to the child or the couple Not considered morally or religiously required o Preimplantation Genetic Testing Judaism allows for selective abortion of fetuses with extreme diseases (such as Tay-Sachs) and thus transfer of specially selected embryos is not problematic Testing for sex selection acceptable if one sex has a severe genetic defect o Multifetal reduction is allowed But to prevent unnecessary abortions, no more than 3 embryos should be transferred o Embryos not transferred Creating and freezing extra embryos is acceptable Discarding embryos is not ideal but is allowed o Donor Gametes and Embryos With caution and a sense of reverence the use of donor gametes and embryos could represent an appropriate expansion of the human partnership with God Couples should also consider adoption Couples may donate gametes or embryos but they would be responsible for making sure the child is well cared for

• Catholic View (SCDF)

o IVF One cannot separate the conjugal act from the production of an embryo so IVF is not acceptable o Prenatal diagnosis Morally allowed as long as it doesn't impose extreme risks but is not allowed to be used as a death sentence Therapeutic procedures may be performed on the embryo if they are supposed to promote well-being Attempts to influence chomosomic or genetic inheritance are not allowed Experimentation on embryos which is not directly therapeutic is illicit o Embryos not transferred Freezing embryos means an affront against human dignity Every human must be respected from the very first instance of its existence Donor gametes cannot be used because a child must come from the fruit of marriage and for the same reason surrogate mothers should not be used o Donor Gametes and Embryos Donor gametes cannot be used because a child must come from the fruit of marriage and for the same reason surrogate mothers should not be used o Artificial insemination Cannot be used unless it is not a substitute for the conjugal act but serves to facilitate and help the act so it can serve its natural purpose

• Analyze Buck v. Bell, including Gould's assessment and the connection between genetics and eugenics

o In Buck v. Bell the Supreme Court argued that the government had a legitimate right to forcibly sterilize people such as Carrie Buck, who they believed to be an imbecile. They argued that "Three generations of imbeciles are enough," and that it would be better for the nation to sterilize people who they believed were hurting society. They hoped to prevent children from being born who they thought would be predisposed to crime and other conditions. This upheld the notion that being a criminal or an imbecile was something that could be passed from generation to generation and that they could get rid of such people if they stopped them from reproducing. They justified their choice by likening compulsory sterilization to compulsory vaccination.

• Explain reasons for and against using age as a criterion for access to health care. (Several articles & B&C)

o Probability of successful treatment (medical utility); age may be an indicator of the probability of surviving and benefitting from a treatment/operation; looking at QALYs (quality-adjusted life year) based on the quality and number of years of life that would be added by the intervention o Norman Daniels— faced with a limited lifetime health budget, the "prudent buyer" would invest in elements of HC that would enhance the likelihood of reaching reasonable longevity rather than reserve funds to extend life at its end; more resources for younger people to maximize each person's chance of living at least a normal lifespan o Alan Williams—"Fair innings" argument; considers a person's whole lifetime experiences and seeks equality; each person receiving the same level of HC but at different stages of life; requires discrimination against the elderly o Callahan (361-7)—when a person has lived out a natural life span, medical care should not be used to resist death, but only to mitigate suffering; the government is obligated to help its citizens live out a higher quality of life of a natural lifespan but to not to indefinitely extend the length of their lives; need for cultural acceptance of dying and death and to stop fighting natural death at the end of life; the dying elderly should not consume a disproportionate share of HC costs at the expense of children etc. Against: o Stereotyping of the elderly o Creation of conflict between generations o Elderly didn't have access to technologies that are now available; and now they are denied them? o B&C: proceed with caution! Age-based allocations of HC could be implemented in a just, beneficial way but in many countries they are unjust o Norman Levinsky (p367-9)—medical care that extends life devoid of human qualities should not be undertaken, but this principle should apply equally to patients of all ages, not only to the elderly; allocate resources according to the probability that a patient will benefit rather than his/her age; actually, very small savings if we eliminated high-tech life procedures for the elderly o Joseph Boyle (p370-5)—age should not be used as a standard for denying medical treatment; age does correlate with many of the factors which might make it reasonable to deny HC benefits to some people (expected benefit, equal use of HC over a lifetime) but it is theses factors, not age, which are relevant to fair rationing decisions; doesn't mean that elderly are automatically entitled to all resources of HC system though

• Describe Rothman's explanation of research abuses around the time of WWII.

o Researchers endangered the lives of their subjects without informing them of the risks or obtaining their permission o Unethical and questionably ethical procedures were common o Pressures of advancement and promotion motivated these researchers to do these risky procedures o Research ethics was not a widespread concern o The turning point in human experimentation in the US was WWII, practices established during these yrs. influenced researchers' behavior in the postwar o At this time clinical investigations became well-coordinated, extensive, centrally funded team efforts, & experiments were designed to benefit not the subjects but others (like soldiers who were vulnerable to the disease) o Pres. Roosevelt created the Office of Research and Development to oversee the work of the Committee on Medical Research (CMR) o Asylum wards where dysentery was widespread where used as research settings to find potential vaccines instead of battle fields- no one objected to performing experiments on impaired inmates o Research trials were also performed on orphans and mentally retarded people o Malaria research was done on inmates, they would infect them w/ malaria then given antimalarial therapies o In another CMR study some people were given an influenza vaccine then subjected to the disease to see if they'd get it, the control group was not given the vaccine and was just exposed to influenza, some people suffered from lumps near the injection spots o Principles of informed consent and risk- benefit calculations were largely ignored in these studies, voluntariness disappeared when the research had to do with helping to support the war o When research didn't have an unambiguous social approval formal review and procedures for obtaining consent became necessary ( like w/ the gonorrhea study) o Wartime environments undercut the protection of human subjects- they thought that all citizens ( including retarded people) should be doing their part to help fight the war o Wartime promoted utilitarian over absolutist position- the greatest good for the greatest # of people o Ethics of American research during WWII were utilitarian o Utilitarian ethic continued to govern human experimentation b/c the benefits seems greater than the cost, no groups/ individuals opposed this ethic

• Know the Roman Catholic lines of reasoning about reproductive technologies, including the position of the Congregation for the Doctrine of the Faith (SCDF)

o SCDF - This document opposed all technological interventions into the process of human reproduction. More specifically, it condemned AI and ET, IVF, and surrogate motherhood under all circumstances. New technologies raise serious moral problems in relation to the respect due to the human being from the moment of conception, to the dignity of the person, of his or her sexuality, and the transmission of life. We need to have more respect for life and love. We can't separate the unitive and the procreative acts. We don't have a "right" to have a child.

• Jewish View (Dorff)

o Should not be left open to the market place Would lead to people being cloned without their knowledge Some would be worthy of cloning while others would not, establishing a hierarchy Makes people into commodities o Therapeutic cloning Legitimate to produce a clone to get bone marrow from them but must raise the clone as any other child o Cloning is morally neutral, it is how we use it that matters o Cloning animals and plants for cures and foods is allowed as long as we don't harm the environment o Cloning humans ok if it is intended to advance medical research or cure infertility o Recommendations Cloning should be regulated, not banned and should be allowed only for medical research or therapy because God mandates us to heal Restrictions must be negotiated worldwide

• Explain the distinction between germ-line and somatic-cell interventions and between therapeutic and enhancement interventions. What ethical significance do these distinctions have?

o Somatic-cell interventions -treat any cells of the individual, except the gametes, at the cellular level to correct an absent or malfunctioning gene Attempt to remedy the causes rather than alleviate effects of the disease provide more effective and beneficial medical treatments o Germ-line intervention attempts to repair or replace malfunctioning genes, treats the gametes or an embryo, which would be used in the case of in vitro fertilization o principal difference is that the corrected gene, rather than the deleterious one, is passed-on to subsequent generationsthe potential benefits or effects of germ line therapies could be much more widespread than those of somatic therapies o Somatic-cell interventions fix at the molecular level rather than focusing on the organs and other things; therefore, it is seen as a more sophisticated method. So long as they are safe, the interventions are okay. However, a patient tied under experimental treatments thus prompting public outcry o Against germ-line humans should not attempt to construct the genetic inheritance of future generations Individuals carrying a recessive deleterious gene, for example, might in the future incur certain survival advantages in response to changing environmental factors much more widespread consequences than those of somatic interventions Humans do not have a right to shape the genetic endowment of their descendants "enhanced children" or "designer babies" Slippery slope & playing God o Therapeutic interventions - performed for the purpose of medical treatment such as chromosomal defects o Enhancement interventions - designed for the purpose of enhancing performance in one way or another; efforts to make someone, not just well, but better than well regarded categorically as violations of international human rights principles or other religious or moral values o Concerns: What is normal When is it truly therapeutic or enhancement undermining of the principle of social equality and the problem of creating an unfair advantage that would be enjoyed by enhanced individuals playing God concerns center on augmentation of functions that without intervention would be considered entirely normal

o Somatic-cell interventions

o Somatic-cell interventions refer to types of human genetic engineering that only involve the body cells (non-reproductive cells). The changes created as a result only affect the individual. Somatic-cell interventions are generally much more accepted because any risks associated are only with one patient. However, many argue that allowing somatic-cell intervention would inevitably lead toward germ-line interventions.

Ethics of Cloning for Biomedical Research The Council presents various positions for and against cloning for the purposes of biomedical research:

• FOR Cloning for Biomedical Research: Drawing upon the obligation to relieve human suffering, supporters of cloning for biomedical research recognize that cloning provides opportunities for treating many chronic diseases and disabilities. Though there are burdens associated with cloning, they are outweighed by the relative benefits that could could from it. o Position 1: recognizes risks, but states that these can be kept in check Intermediate moral status - we should respect the embryo as having partial human status, but cloning is morally permissible if strictly regulated Deliberate creation for use - since the embryos would be used for save lives and advance medicine rather than destroyed for no reason, it is morally permissible Going too far - approve of research on cloning only during first 14 days of embryonic development o Position 2: sees no moral issue with cloning for these purposes, as they believe that the early-stage cloned embryo has no special moral status

Roman Catholic

• Life is a continuum from the moment of fertilization to death. Thus, it is morally unacceptable to destroy embryos to obtain stem cells for research, as a life would be extinguished • Unlike Jewish tradition, moral status is not conferred in stages • Destruction or buying/selling for research purposes, even in the hopes to alleviate human suffering, is disrespectful and degrades the value and dignity of the embryo • Church condemns abortion as an evil act, thus by extension it is morally wrong to obtain stem cells from aborted fetuses • It is not man's place to exert control of God's creation • Entire Catholic populace is not unified behind the Church's official position • Some view conception as a process, not a specific moment, thus the very early embryo may not have full moral status

• Describe Murray's perspective on reproductive cloning.

• Murray writes about reproductive cloning in response to a letter read by a scientist, written by a patient, in which a father has lost his 11-month old son and looks to cloning as a means of bringing him back • Murray identifies some of the arguments given by cloning advocates and refutes/mocks them all --these arguments include: o indulging narcissm (creating "mini me's") o idea that liberty trumps everything else (adults should have right to use any means possible to have the child they want) o playing the sympathy card • Murray then identifies four "hard truths" 1. Cloning does not result in healthy, normal offspring • reports on animal cloning show that offspring have suffered staggering rates of abnormalities and death • one expert says he does not believe there is a single healthy cloned mammal in existence • thus trying to make a child at this stage in the technology would be "immoral human experimentation" 2. Even if cloning produced a healthy embryo, the result would not be the same person as the one whose genetic material was used • many environmental factors effect a fetus's/ child's growth and development 3. Creating a child to stand in for another - dead—child is unfair 4. There is no real escape from grief • there are no technological fixes for grief