SOC 5510 -6 The purpose of this  is to demonstrate that you can identify historical and current issues in bioethics, and synthesize the impact of bioethics

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SOC 5510 -6 The purpose of this  is to demonstrate that you can identify historical and current issues in bioethics, and synthesize the impact of bioethics on research, education, and practice of medicine. One major aim of sociology is to understand and ameliorate social inequalities of all types. For this , prepare a short video training for a health researcher that teaches them about bioethics and how to conduct research in an ethical manner in order to promote equality for all people. Draw on Chapter 13 of your Weitz textbook and the DeVries and Lopez articles for ideas about what to include, and use at least two additional scholarly sources in the training. The training should be five to seven minutes long and include a brief history of bioethics, recent issues in bioethics, and recommendations for how to conduct health and medical research in adherence to with ethical practices. “After the Nazi defeat, the Allied victors prosecuted 23 of these doctors forcommitting“medical crimes against humanity,”eventually sentencing 7 to deathand 9 to prison (Lifton, 1986). These decisions constituted the basis for what isnow known as theNuremberg Code, a set of internationally recognized prin-ciples regarding the ethics of human experimentation (see Box 13.1). The coderequires researchers to have a medically justifiable purpose; do all they can toprotect their subjects from harm; and ensure that their subjects giveinformedconsent, that is, voluntarily agree to participate in the research with a full under-standing of the potential risks and benefits.The Rise of BioethicsBecause the trials received relatively little publicity in the United States andbecause Americans typically viewed Nazi doctors asNazisrather than as doctors,few drew connections between Nazi practices and American medical practices(Rothman, 1991). As a result, discussion of bioethics remained largely dormantin the years following the Nuremberg Trials. During the 1960s and early 1970s,however, ethical questions regarding medical care and research in the UnitedStates became topics of popular discussion.Bioethics and the New TechnologiesOne reason for rising concern was therise of new technologies. Of particular importance was the development of kidneydialysis, a technology that could keep alive persons whose kidneys had failed (Foxand Swazey, 1974). Demand for dialysis far outstripped supply, forcing selectioncommittees made up of doctors and in some cases lay people to decide whowould receive this life-saving treatment and who would die. Forced to choosefrom among the many who, on medical grounds, were equally likely to benefitfrom the treatment, these committees frequently based their choices on social crite-ria such as gender, age, apparent emotional stability, social class, and marital status.When news of these committees’work reached the public, the resulting outcry ledto new federal regulations designed to allocate kidney dialysis more fairly.Whereas the dialysis debate focused on the right to gain access to life-savingtechnologies, the case of Karen Quinlan focused attention on theright to die,which essentially translates to the right to refuse medical technologies, from feed-ing tubes to heart/lung machines. At the age of 21, after ingesting a combinationof drugs at a party, Quinlan fell into a coma. Initially, her parents encouraged herdoctors to do everything possible to keep her alive and restore her health. Onceher parents learned that she had suffered extensive brain damage and wouldnever regain any mental or physical functioning, however, they asked that shebe removed from life support and allowed to die. When the doctors refused,the parents took their fight to the courts. After almost a year of legal battles,Quinlan’s parents won the right to remove her from the mechanical respiratorthat had kept her alive.The Quinlan case gained enormous public attention and sympathy for theright to die and highlighted the problems involved in having too much, ratherthan too little, access to medical care and technology. In addition, the Quinlan”
“case signaled both the entry of lawyers and the legal system into health care deci-sion making and the problems with using the courts to decide such intenselypersonal issues (Bosk, 2010).Bioethics and Medical ResearchDuring the same years, concern grew notonly about the ethics of medicalpractice, but also about the ethics of medicalresearch. These concerns were initially brought to public attention in 1966,when Henry Beecher (1966) published an article in the prestigiousNew EnglandJournal of Medicinedescribing 22 recent research studies, published in top medicaljournals, that had relied on ethically questionable methods. In one study, forexample, soldiers sick with streptococcal infections received experimental treat-ments instead of penicillin, causing 25 soldiers to develop rheumatic fever. Inanother, doctors inserted catheters into the bladders of healthy newborns andX-rayed them, without parental consent, to study how bladders worked.To determine the frequency of such studies, Beecher looked at 100 conse-cutive research studies published in a prestigious medical journal. In 12 of the100 studies, researchers had not told subjects of the risks involved in the experi-ments or had not even told the subjects that they were in an experiment. Yet nojournal reviewer, editor, or reader had questioned the ethics of these studies.Beecher’s article sent ripples of concern through both the medical world andthe general public as news of the article spread through the mass media. Thispublic concern translated into pressure on Congress and on the US PublicHealth Service (PHS), at the time the nation’s major funder of medical research.To demonstrate to Congress that it could handle the problem itself and to keeppublic concern from turning into budget cuts, the PHS in 1966 published guide-lines for protecting human subjects in medical research (Rothman, 1991).The Willowbrook Hepatitis StudyConcern about medical research was furtherheightened when the Willowbrook hepatitis story and the Tuskegee syphilisstudy burst into the news in the early 1970s. Willowbrook State School, runby the state of New York, was an institution for mentally retarded children.Conditions in Willowbrook were horrendous, with children routinely leftnaked, hungry, and lying in urine and excrement. As a result, hepatitis, a highlycontagious, debilitating, and sometimes deadly disease, ran rampant among thechildren and to a lesser extent the hospital staff.In 1956, to document the natural history of hepatitis and to test vaccinationsand treatments, two pediatrics professors from New York University School ofMedicine began purposely infecting children with the disease. In addition, to testthe effectiveness of different dosages of gamma globulin, which the researchersknew offered some protection against hepatitis, they injected some childrenwith gamma globulin but left others unvaccinated for comparison. The children’sparents had consented to this research but had received only vague descriptionsof its nature and potential risks.The researchers offered several justifications for their work. First, theyargued, the benefits of the research outweighed any potential risks. Second,they had infected the children only with a relatively mild strain of the virus” “and therefore had decreased the odds that the children would become infectedwith the far less common but considerably more dangerous strain that alsoexisted in the school. Third, the children who participated in the experimentslived in better conditions than did the others in the institution and thereforewere protected against the many other infections common there. Fourth, theresearchers argued that the children would probably become infected with hep-atitis anyway, given the abysmal conditions in the institution. Finally, theresearchers believed they should not be held accountable because the parentshad given permission. Using these arguments, the researchers had obtainedapproval for their experiments from the state of New York, the WillowbrookState School, and New York University. Over a 15-year period, they publisheda series of articles based on their research, without any reviewers, editors, orreaders raising ethical objections.In 1970, however, the ethical flaws of these experiments were exposed inthe popular media and in medical journals. These experiments, many argued,violated the basic principle of informed consent. The parents had not giventrulyvoluntaryconsent because they could get their children admitted to Willow-brook only by allowing them to participate in the hepatitis experiments. In addi-tion, parents had not given trulyinformedconsent because researchers had nottold them that gamma globulin could provide long-term immunity to hepatitis.Opponents of the study also questioned why the researchers experimented onchildren, who could not give informed consent, rather than on hospital staff.Finally, opponents questioned why the researchers—who, after all, were pedia-tricians—had chosen to take advantage of this“opportunity”to study hepatitisrather than trying to wipe out the epidemic. This debate exploded in the NewYork media and, in the ensuing public outcry, the research ground to a halt.The Tuskegee Syphilis StudySimilar questions arose in 1972, when the TuskegeeSyphilis Study made headlines (Jones, 1993). Begun by the federal PHS in 1932,the study, which was still underway, was intended to document the natural pro-gression of untreated syphilis in African American men. At the time the studybegan, medical scientists understood the devastating consequences of untreatedsyphilis in whites (including, in its later stages, neurological damage and heartdisease). But reflecting the racist logic of the times, the scientists suspected itsprogression took a different and milder form in African Americans.For this study, researchers identified 399 desperately poor and mostly illiter-ate African American men, all with untreated late-stage syphilis, who lived in theTuskegee, Alabama, area. The men were neither told they had syphilis noroffered treatment. Instead, researchers informed them that they had“badblood”(a local term for a wide variety of ailments) and offered them free healthcare, transportation to medical clinics, free meals on examination days, and pay-ment of burial expenses—enormous inducements given the men’s extreme pov-erty—if the men would participate in the study.At the time the study began, treating syphilis was difficult, lengthy, andcostly. The development of penicillin in the early 1940s, however, gave doctorsa simple and effective treatment. Yet throughout the course of the study” “researchers not only did not offer penicillin to their subjects but also kept themfrom receiving it elsewhere. During World War II, researchers worked withlocal draft boards to prevent their subjects from getting drafted into the military,where the subjects might have received treatment. When federally funded vene-real disease treatment clinics opened locally, researchers enlisted the support ofclinic doctors to keep research subjects from receiving treatment. Similarly,they enlisted the cooperation of Tuskegee’s all-white medical society to ensurethat no local doctor gave penicillin to their subjects for any other reason.The Tuskegee Syphilis Study, which treated African American men as less-than-human guinea pigs, was not the work of a few isolated crackpots. Rather, itwas run by a respected federal agency with the cooperation of state and countymedical associations and even of doctors and nurses from the local TuskegeeInstitute, a world-renowned college for African Americans. Over the years,more than a dozen articles based on the study appeared in top medical journalswithout anyone ever questioning the study’s ethics. Yet the study patentlyflouted the Nuremberg Code and, after 1966, the PHS’s own research ethicsguidelines. Nevertheless, the study did not end until a 1972 newspaper exposécaused public outrage. By that time, at least 28 and possibly as many as 100research subjects had died of syphilis, and an unknown number had succumbedto syphilis-related heart problems (Jones, 1993).CONTEMPORARY ISSUES IN BIOETHICSAs health care has evolved, so have questions about bioethics. Indeed, there arefar too many bioethics issues for one chapter—or even one book—to cover.This section provides a sampling of currently simmering debates in bioethics.Reproductive TechnologyOne area that has sparked considerable debate since the late 1970s isreproductivetechnology, or medical developments that allow doctors to control the processof human conception and fetal development. Reproductive technology firstcame to the public’s attention in 1978 with the birth of Louise Brown, the world’sfirst“test-tube baby.”Louise’s mother was unable to conceive a baby becauseher fallopian tubes, through which eggs must descend to reach sperm and be fertil-ized, were blocked. Using a technique known asin vitro fertilization, her doctorsremoved an egg from her body, fertilized it with her husband’s sperm in a testtube, and then implanted it in her uterus to develop. Nine months later, LouiseBrown was born.Louise Brown’s birth raised questions about how far doctors should go ininterfering in the normal human processes of reproduction. Subsequent casesraised even trickier questions. For example, courts have had to decide whetherfetuses should be placed for adoption when the biological parents have died andwhether custody of fetuses after divorce should go to the parent who wants thefetuses implanted or the one who wants them destroyed. More recently, doctors” “and others have debated whether couples should be allowed to hire women tocarry their fetuses to term for them, whether postmenopausal women should beallowed to have a baby using another woman’s egg, and whether doctors shouldbe allowed to combine genes from a man andtwowomen into one embryo toavoid transmitting genetic defects carried by one of the women.More broadly, these cases have raised basic questions regarding the moralityof intervening so directly in the process of human reproduction, includingwhether individuals are harmed or helped by having access to such technologies.Those who favor the new reproductive technologies argue that the technologiesgive couples greater control over their destinies. Those who oppose the newtechnologies, on the other hand, argue that these technologies seduce couplesinto spending enormous amounts of time and money in a usually futile effortto have children who share their genes, rather than finding other ways (such asadoption) to create meaningful lives for themselves. Opponents also questionwhether these technologies encourage the idea that children are purchasablecommodities and the idea that, for the right price, prospective parents can guar-antee they will get“perfect”children (Rothman, 1986).More recently, increasing use ofin vitrofertilization and related technologieshas contributed to a rise in women carrying multiple fetuses and consequently toan increase in premature births. About 12 percent of US babies are now bornprematurely (Martin, Osterman, and Sutton, 2010; Saul, 2009).When a woman learns she is carrying multiple fetuses, she (and her partner,if she has one) must decide either to abort some of the fetuses or to risk havingtwins, triplets,…. or octuplets. Regardless of their previous feelings on abortion,deciding to abort is very difficult for anyone who has struggled to have a child.If the woman continues with multiple fetuses, the entire family, at somelevel, is at risk. The woman may be confined to bed for months to avoid mis-carrying, placing her under significant physical, psychological, and financial stressif she can no longer work. Childbirth, too, is especially dangerous for bothmothers and babies during multiple births. Moreover, because more than 50 per-cent of twins and more than 85 percent of triplets are born prematurely, manyneed ferociously expensive intensive care, die within the first year, or suffer per-manent mental or physical defects, often resulting in long-lasting emotionalstrains, financial strains, or time burdens on the family (Saul, 2009).Enhancing Human TraitsThe past 30 years also have witnessed growing concern about the ethics of med-ical interventions designed to enhance human traits. No clear definition of suchenhancementsexist, but the term is used to refer to techniques used to improvehuman traits beyond a level generally considered normal rather than to treat con-ditions considered deviant or defective. This is a necessarily subjective definitionbecause individual judgments regarding what is normal vary greatly. Neverthe-less, we would probably all acknowledge a qualitative difference betweenproviding cosmetic surgery to a person with a severely burned face versus pro-viding it to a professional model who desires more prominent cheekbones.”
“Similarly, there is a qualitative difference between using psychotropic drugsto avoid schizophrenic hallucinations versus using them to improve one’sexam grades—a process psychiatrist Peter Kramer (1993) refers to as“cosmeticpsychopharmacology.”Ethical questions regarding enhancements have increased as their use hasincreased (Whitehouse et al., 1997). Is it ethically justifiable for individuals toimprove their offspring through genetic preselection or fetal surgery, and if so,will those who don’t use these technologies become a“genetic underclass?”Should health insurance cover drugs such as Viagra, which helps men achieveerections and can improve quality of life perhaps beyond the norm for a givenage? Should health insurance cover cosmetic (as opposed to reconstructive) sur-gery, and should doctors promote surgeries (such as liposuction) whose benefitsare purely cosmetic and whose potential risks include death? Should psychotro-pic drugs be prescribed to individuals who don’t have diagnosable mental ill-nesses but who want to be more sociable, alert, or assertive? And is it ethical toprovide potentially harmful medical care to enhance some individuals whileothers still lack basic medical care? Finally, some have questioned whetherenhancements provide unethical advantages. If Olympic athletes are forbiddenfrom taking drugs to improve their performance, why are waitresses allowed toget breast implants to generate more tips and businesspeople allowed to take Rit-alin to improve their concentration? Conversely, is it ethical to restrain theoptions of those who would provide or purchase such services?Resource Allocation and the Right to Refuse to TreatFor many years, policy analysts, researchers, and ethicists have raised questionsabout whether the health care system distributes resources such as drugs, medicalcare, and surgical care in a just and ethical way. This debate takes two forms:deciding whichindividualsshould get care and deciding whichproceduresshouldbe funded regardless of individual patient.In the United States, decisions aboutwhoshould get care mostly occurthrough implicit rationing: Anyone who can afford health care gets it, anyonewho can’t afford it doesn’t (Callahan, 1998). In contrast, and as we saw in Chap-ter 9, in other developed nations access to health care is considered a right. TheAffordable Care Act (ACA) is an important step in that direction.But even when individuals can afford health care, decisions still sometimesneed to be made about whether theyshouldhave access to that care (Wicclairand White, 2014). This situation occurs whenever doctors or others consider atreatment to be futile. For example, imagine an 80-year-old woman with a life-threatening infection and heart condition that have left her too ill to speak forherself. Now imagine that her husband demands heart surgery even though herdoctors believe her odds of surviving the surgery and regaining a decent qualityof life are very slim. In cases like this one, the individual’s right to autonomy (inthis case, with the husband legally speaking for his wife) must be balanced withdoctors’ethical responsibilities both to this patient (whom they believe will beharmed by continuing her suffering) and to other patients (given that any” “destroying the embryos). Alternatively, researchers can replace the nucleus froman unfertilized human egg with a cell nucleus taken from a donor’s skin or mus-cle, artificially stimulate this egg (instead of fertilizing it) so it develops into anembryo, and then extract its stem cells. This second process is a form of cloningbecause the embryo will be genetically identical to the donor.To many opponents of stem cell research, the destruction of humanembryos to harvest stem cells is the same as killing humans. Other critics arguethat producing human cells to treat other humans is too close to selling humanbeings and human body parts. This is particularly worrisome because heavypolitical opposition to stem cell research has shifted much of this research to thefor-profit sector, where it escapes most regulation. Others object specifically tothe use of cloning to produce stem cells on the grounds that it is only a matter oftime before some doctors begin using cloned embryos to create cloned babies.They wonder whether in the future babies will be“farmed”and“harvested”to match parents’images of the perfect baby.Supporters of human stem cell research argue that its potential benefits out-weigh its potential problems (Dunn, 2002). Most of the support for this researchhas come from persons who hope stem cells will provide a cure to the diseases thataffect them or their loved ones. Supporters also argue that destroying an artificiallycreated embryo that has no potential to grow into a human being unless it is some-how implanted in a woman’s uterus is not morally equivalent to destroying ahuman being. Finally, with regard to cloning, supporters argue that manywomen who want babies already have donor eggs implanted in their uterusesand that few would choose to use cloned eggs because the chances of success areso low. (So far, no researcher has been able to keep a cloned egg alive for morethan a few days, much less for a nine-month pregnancy.) For all of these reasons,supporters of stem cell research argue that instead of trying to eliminate thisresearch, we should adopt regulations to ensure that it is conducted ethically.Athletes and ConcussionsIn recent years, numerous studies have demonstrated the potentially devastatingconsequences of concussions for athletes, in sports ranging from soccer to cheer-leading (Kirschen et al., 2014). Concussions can cause severe headaches, memoryloss, dementia, and depression, and can be a major factor in suicides. The dangersmultiply when players are very young (so their brains are still developing), whenthey are hit with great force (as in football or bull-riding), when they suffer mul-tiple concussions over time, and when they are quickly returned to play after aconcussion or hard hit to the head. For these reasons, the American Academy ofNeurology has officially declared that doctors who care for athletes are ethicallyrequired“to safeguard the current and future physical and mental health of[those] patients”(Kirschen et al., 2014:352). This means that doctors must putthe interests of players above those of teams, schools, and any other organizationor individual for whom they work.One can easily argue that those same ethical obligations extend to coaches,trainers, nurses, parents and anyone else who participates in deciding whether aplayer should return to the field—although of course the ethical obligation falls” “heaviest on those with the most medical knowledge. In addition, some argue thatschools and athletic organizations have an ethical obligation to provide appropri-ate testing and treatment to injured athletes and to ensure that players don’t losetheir scholarships if they must stop playing to protect their health. Finally, someargue that sports fans who understand the risks have an ethical obligation to maketheir views known—whether through boos, letters, or decisions against buyingtickets—when players are returned to the field too soon (Kaminer, 2012).INSTITUTIONALIZING BIOETHICSConcern about bioethics has led to the development of formal mechanisms toensure that health care and health research will be conducted ethically. In thissection, we look at four of those mechanisms: hospital ethics committees, insti-tutional review boards, professional ethics committees, and community advisoryboards.Hospital Ethics CommitteesThe origins of hospital ethics committees can be traced to the 1950s. Asnoted earlier, many hospitals used committees to select patients for kidneydialysis. Similarly, hospitals routinely used committees to decide which women” “merited abortions on medical grounds. At the time, the legal status of abortionwas unclear, and the moral status of abortion was just starting to become a publicissue (Luker, 1984).Other hospital ethics committees arose in the aftermath of the 1982“BabyDoe”case, in which parents of a newborn who was mentally retarded and had adefective digestive system decided that they did not want the defect corrected bysurgery. The doctors complied with their decision, and the baby died six dayslater. When news of the case broke, a public furor arose. These days, mostlarge hospitals have ethics committees or consultants available to review anycases considered ethically problematic.Institutional Review BoardsAlthough universities and hospitals began establishing committees to reviewresearch ethics in the 1960s, such committees did not become common untilthe 1970s. In the aftermath of the Tuskegee scandal, Congress in 1974 createdthe National Commission for the Protection of Human Subjects of Biomedicaland Behavioral Research. The Commission’s reports laid the groundwork forcurrent guidelines regarding research ethics. That same year, the NationalResearch Act mandated the development ofinstitutional review boards(IRBs)charged with reviewing all federally funded research projects involvinghuman subjects. Such boards now exist at all universities and other researchinstitutions, and monitor social science as well as medical research.In recent years, though, pharmaceutical research has increasingly shiftedfrom federally funded projects in hospitals and universities to for-profit projectsfunded by pharmaceutical companies and conducted by research organizations,individual doctors, or the pharmaceutical companies themselves. To overseethis research, for-profit,commercialIRBs have emerged, either run by or undercontract with pharmaceutical companies or other research organizations(Lemmens and Freedman, 2000).The conflict of interest involved in such IRBs is obvious. When employeesof a pharmaceutical company review their company’s research, they know thattheir company’s success depends on getting that research approved. Similarly,those who work for commercial IRBs know that they are unlikely to get futurecontracts from pharmaceutical companies unless they approve those companies’research proposals.Professional Ethics CommitteesMany professional organizations now also have ethics committees that establishguidelines for professional practice. The American Fertility Society, for example,has published a statement of principles regarding the moral status of humanembryos created in laboratories, and the ethics committee of the AmericanCollege of Obstetrics and Gynecology has published guidelines regarding theethics of selectively aborting fetuses when a woman who has used fertilitydrugs becomes pregnant with multiple fetuses.”
“The most recent development in this area is the emergence of communityadvisory boards (CABs). The purpose of CABs is to bring individuals from thecommunity together with health care providers to make difficult bioethicaldecisions regarding both research and treatment (Quinn, 2004). For example,CABs may be asked to represent patients in treatment decisions when thepatients are unconscious or incompetent and family members are unavailable.The use of CABs to evaluate research designs is linked to the rise of geneticresearch. Typically, we think of genetic testing as an individual decision: Shouldsomeone whose mother died of breast cancer or whose sister has Down syn-drome get a genetic test to ascertain her own risk of having or passing on thesediseases? But genetic testing also has implications for communities. Genetictests can stigmatize an entire community (when, for example, African Americanswere first identified as having higher risks of sickle cell anemia), can challengeideas about whobelongsto a community (when genetic differences are foundwithin a community), and can challenge a community’s ideas about its origins(when, for example, Native American legends locating tribal origins in theAmericas clash with genetic findings suggesting Asian origins). For these reasons,researchers have begun involving communities in discussions of research priori-ties, research design, and the dissemination of research findings. This leaves open,however, the very large question of who constitutes a community and whoshould decide for it.THEIMPACTOFBIOETHICSThe growth of the bioethics movement and the institutionalizing of bioethics inUS hospitals and universities have made ethical issues more visible than everbefore. Articles on bioethics, virtually nonexistent before the 1960s, now appearroutinely in medical journals while in both the clinical and research worlds,ethics committees have proliferated.These developments have led some observers to conclude that the bioethicsmovement has fundamentally altered the nature of medical work. According tohistorian David Rothman:By the mid-1970s, both the style and the substance of medical decision-making had changed. The authority that an individual physician hadonce exercised covertly was now subject to debate and review bycolleagues and laypeople. Let the physician design a research protocol todeliver an experimental treatment, and in the room, by federal mandate,was an institutional review board composed of other physicians, lawyers,and community representatives to make certain that the potentialbenefits to the subject patient outweighed the risks. Let the physicianattempt to allocate a scarce resource, …

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