Explain in detail how the article below on bioethicsrelates to the major themes and problems in the book Immortal Lifeof Henrietta Lacks by Rebecca Skloot.
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BIOETHICS.
Bioethics as a field is relatively new, emerging only in thelate 1960s, though many of the questions it addresses are as old asmedicine itself. When Hippocrates wrote his now famous dictumPrimum non nocere (First, do no harm), he was grapplingwith one of the core issues still facing human medicine, namely,the role and duty of the physician. With the advent oflate-twentieth-century science, an academic field emerged toreflect not only on the important and age-old issues raised by thepractice of medicine, but also on the ethical problems generated byrapid progress in technology and science. Forty years after theemergence of this field, bioethics now reflects the profoundchanges in medicine and the life sciences.
Nature and Scope of Bioethics
Against the backdrop of advances in the life sciences, the fieldof bioethics has a threefold mission: (1) to raise importantquestions about the general practice of medicine and theinstitutions of health care in the United States and othereconomically advanced nations, (2) to wrestle with the novelbioethical dilemmas constantly being generated by new biomedicaltechnologies, and (3) to challenge the presumptions ofinternational and population-based efforts in public health and thedelivery of health care in economically underdeveloped parts of theglobe. While attention to the ethical dilemmas accompanying theappearance of new technologies such as stem cell research ornanotechnology can command muchPage 214Â Â | Top ofArticleof the popular attention devoted to the field, theother missions are of equal importance.
At the core of bioethics are questions about medicalprofessionalism, such as: What are the obligations of physicians totheir patients? and What are the virtues of the \"good doctor\"?Bioethics explores critical issues in clinical and researchmedicine, including truth telling, informed consent,confidentiality, end-of-life care, conflict of interest,nonabandonment, euthanasia, substituted judgment, rationing of andaccess to health care, and the withdrawal and withholding of care.Only minimally affected by advances in technology and science,these core bioethical concerns remain the so-calledbread-and-butter issues of the field.
The second mission of bioethics is to enable ethical reflectionto keep pace with scientific and medical breakthroughs. With eachnew technology or medical breakthrough, the public finds itself inuncharted ethical terrain it does not know how to navigate. In thetwenty-first century—what is very likely to be the \"century ofbiology\"—there will be a constant stream of moral quandaries asscientific reach exceeds ethical grasp. As a response to thesemonumental strides in science and technology, the scope ofbioethics has expanded to include the ethical questions raised bythe Human GenomeProject, stem cell research, artificialreproductive technologies, the genetic engineering of plants andanimals, the synthesis of new life-forms, the possibility ofsuccessful reproductive cloning, preimplantation genetic diagnosis,nanotechnology, and xenotransplantation—to name only some of thekey advances.
Bioethics has also begun to engage with the challenges posed bydelivering care in underdeveloped nations. Whose moral standardsshould govern the conduct of research to find therapies orpreventive vaccines useful against malaria, HIV, or Ebola—localstandards or Western principles? And to what extent is manipulationor even coercion justified in pursuing such goals as the reductionof risks to health care in children or the advancement of nationalsecurity? This population-based focus raises new sorts of ethicalchallenges both for health care providers who seek to improveoverall health indicators in populations and for researchers whoare trying to conduct research against fatal diseases that are atepidemic levels in some parts of the world.
As no realm of academic or public life remains untouched bypressing bioethical issues, the field of bioethics has broadened toinclude representation from scholars in disciplines as diverse asphilosophy, religion, medicine, law, social science, public policy,disability studies, nursing, and literature.
History of Bioethics
Bioethics as a distinct field of academic study has existed onlysince the early 1960s, and its history can be traced back to acluster of scientific and cultural developments in the UnitedStates during that decade. The catalysts for the creation of thisinterdisciplinary field were the extraordinary advances in Americanmedicine during this period coupled simultaneously with radicalcultural changes. Organ transplantation, kidney dialysis,respirators, and intensive care units (ICUs) made possible a levelof medical care never before attainable, but these breakthroughsalso raised daunting ethical dilemmas the public had neverpreviously been forced to face, such as when to initiate admissionto an ICU or when treatments such as dialysis could be withdrawn.The advent of the contraceptive pill and safe techniques forperforming abortions added to the ethical quandaries of the \"newmedicine.\" At the same time, cultural changes placed a new emphasison individual autonomy and rights, setting the stage for greaterpublic involvement and control over medical care and treatment.Public debates about abortion, contraceptive freedom, and patientrights were gaining momentum. In response, academics began to writeabout these thorny issues, and scholars were beginning to viewthese \"applied ethics\" questions as the purview of philosophy andtheology. \"Bioethics\"—or, at the time, \"medical ethics\"—had becomea legitimate area of scholarly attention.
In its early years, the study of bioethical questions wasundertaken by a handful of scholars whose academic home wastraditional university departments of religion or philosophy. Thesescholars wrote about the problems generated by the new medicine andtechnologies of the time, but they were not part of a discoursecommunity that could be called an academic field or subject area.Individual scholars, working in isolation, began to legitimizebioethical issues as questions deserving rigorous academic study.But bioethics solidified itself as a field only when it becamehoused in institutions dedicated to the study of these questions.Academic bioethics was born with the creation of the first\"bioethics center.\"
Ironically, academic bioethics came into existence through thecreation of an institution that was not part of the traditionalacademy. The first institution devoted to the study of bioethicalquestions was a freestanding bioethics center, purposely removedfrom the academy with its rigid demarcations of academic study. Theinstitution was the Hastings Center, originally called TheInstitute of Society, Ethics and the Life Sciences, which openedits doors in September 1970. Its founder, Daniel Callahan, alongwith the psychiatrist Willard Gaylin, M.D., created the center tobe an interdisciplinary institute solely dedicated to the seriousstudy of bioethical questions. Callahan, a recently graduated Ph.D.in philosophy, had been one of the isolated scholars working on anissue in applied ethics, and he had found himself mired in complexquestions that took him far afield from the traditional boundariesof philosophy. His topic, abortion, required engagement with thedisciplines of law, medicine, and social science, which he felthimself unprepared to navigate. With academic departmentsfunctioning as islands within a university, it seemed that trulyinterdisciplinary work was impossible. The Hastings Center wasfounded to create an intellectual space for the study of theseimportant questions from multiple perspectives and academicareas.
The second institution that helped solidify the field ofbioethics was the Kennedy Institute of Ethics, which opened atGeorgetown University in 1971. The founders had similar goals tothose of Hastings, though they placed their center inside thetraditional academy. While housed outside of any particularacademic departments, the Kennedy Institute came to look more likea traditional department, offering degree programsPage215Â Â | Top of Articleand establishing facultyappointments along a university model.
From these modest beginnings, the field of bioethics exploded,with dozens of universities following suit, creating institutionswhose sole function was the study of bioethical issues. Its growthwas fueled by the appearance both of new technologies such as theartificial heart and in vitro fertilization and new challenges suchas HIV. Bioethics was now permanently on the academic map andcentral to public discourse.
Institutions of Bioethics
Since the early 1970s, as bioethics has gained legitimacy, therehas been an increasing trend of bioethics centers becoming academicdepartments. Originally modeled on the structure of an independent\"think tank,\" the bioethics centers of the early twenty-firstcentury are often housed within either a medical school or schoolof arts and sciences, indistinguishable in structure from any otherdepartments in those schools. The professionalization of bioethicshas taken it from the academic margins to the center, and with thisdevelopment has come all of the trappings of traditional academics,such as tenure, degree programs, professional conferences, andacademic journals.
Beginning in the 1980s, medical schools began housing bioethicsinstitutes either as departments of medical ethics or departmentsof medical humanities. Located within an undergraduate medicalschool, the duties of these departments include the ethicseducation of the M.D. students. Whereas the original bioethicscenters had as their primary focus the production of scholarlyresearch, departments of bioethics have pedagogical obligations andare viewed as institutions designed to serve the narrowereducational mission of the school. Bio-ethics institutions that areinstead housed within a school of arts and sciences have the sametype of pedagogical obligations, though perhaps serving a differentstudent population, namely, university undergraduates or graduatestudents. Departments of bioethics, depending on theirconfiguration, offer traditional undergraduate or graduate courses,undergraduate majors or concentrations, graduate degrees (usuallymaster's degrees), undergraduate medical school ethics training,and/or residency ethics training. By the early twenty-firstcentury, there were more than sixty master of bioethics programs inthe United States, attracting a diverse student populationincluding recent undergraduates; students pursuing joint J.D.,M.D., and Ph.D. degrees; and midcareer professionals from thefields of law, medicine, and public policy whose work requiresspecialty training in the field of bioethics.
Another result of the professionalization of bioethics was thepressure to publish in traditional scholarly venues, such asacademic journals. But the formation of a new academic field ofstudy necessitated the creation of academic journals in which topublish these novel scholarly works. Journals emerged that weredesigned solely for works in the field of bioethics, including theHastings Center Report, the Kennedy Institute ofEthics Journal, the American Journal of Bioethics,and Bioethics. But the mainstreaming of bioethics into theacademy also opened up space within traditional medical andscientific journals for scholarly works in bioethics. Research inbioethics is now routinely published in the likes of theJournal of the American Medical Association, the NewEngland Journal of Medicine, Science, and Nature.
Perhaps the institution most effectively used within the fieldof bioethics is the Internet. All major bioethics institutes,centers, and departments (and some journals) have elaborate Websites, not only offering information about the specificinstitution, faculty, and degree programs, but also undertaking aneducational mission to raise the level of public debate aboutcurrent bioethical issues. These Web sites offer substantiveinformation for individuals seeking to become better informed aboutthese issues. One of the most developed Web sites is the companionsite to the American Journal of Bioethics(www.bioethics.net ). This Web site not only offers actualscholarly works in the field but also includes a high schoolbioethics project, job placement information, a \"Bioethics forBeginners\" section, and a collection of bioethics news stories fromthe popular press, updated daily, with direct links to the originalnews articles.
The Methods of Bioethics
The founders of the field of bioethics and its first leaderswere largely theologians or philosophers. Reflecting the scholarlyconventions of their home disciplines, the first works in bioethicscentered on a normative analysis of bioethical issues, arguing foror against the moral permissibility of a particular technology,practice, or policy. Starting in the 1970s, these philosophers andtheologians were joined by physicians and lawyers, who too madenormative claims about bioethical problems. But by the mid-1990s,bioethics was attracting populations of scholars who had notpreviously been well represented in the field, namely, socialscientists and empirically trained clinicians, both physicians andnurses. With the entry of these new groups of scholars, the\"methods\" of bioethics began to shift, mirroring the methodologiesof the new disciplines becoming central to the field. With thischange, bioethics included not only normative analysis but also theempirical study of bioethical questions, what Arthur Caplan hascalled \"empiricized bioethics.\"
Empiricized bioethics takes one of two forms: either it seeks tocollect empirical data needed to shed light on a bioethicalproblem, or it attempts to stand outside the discipline in order tostudy the field itself. Projects taking the first form use eitherqualitative or quantitative social science methodology to collectdata needed to make persuasive bioethical arguments. Theseempirical studies might explore, for example, patient comprehensionof medical information, patient and family experience with medicalcare, the ability of children or incompetent adults to give consentfor research participation, or the frequency with whichpractitioners face particular ethical dilemmas.
Projects taking the second form explore the way in which thefield of bioethics is evolving, the influence it has had on policyformation, the methods and strategies it employs, the field'sunderstanding of itself, and its place in public life andcontemporary academia. One very prominent contemporaryPage216Â Â | Top of Articlemethod employing this strategyis narrative bioethics, or what might be called \"deconstructionistbioethics.\" Using the insights of literary criticism, thesebioethicists examine the discourse of the field to reveal itsbiases, conventions, and assumptions, making the field moreself-reflective about its motives and goals. Along the same line,the field has seen the development of feminist bioethics anddisability bioethics, both of which focus on issues of inclusionand exclusion, voice, and their confluence on particularsubstantive issues. Altogether, the empirical methods of bioethicshave been so well received in the field that by the earlytwenty-first century, all bioethics centers and departments hadrepresentation from the social sciences or clinical medicine, andin many cases the empiricists constituted the majority of center ordepartment membership.
One final methodology that has had a significant presence inmedical humanities departments is literary analysis, in whichliterary texts are used as a vehicle for the ethics education ofclinicians in training. These medical humanists use first-personillness narratives or first-person testimonies from clinicians, aswell as important works in fiction, to teach health careprofessionals about the ethical issues involved in being bothpatient and practitioner.
Current Issues in the Field: Bioethics
in the Early Twenty-First Century
The bioethical issues being addressed by the field are toonumerous to count, but the flavor of bioethics in the earlytwenty-first century can be conveyed by an exploration of thebioethical implications of genetic research, health care accessreform, and stem cell research, arguably the most pressing issue inthe field to date.
Advances in the science of genetics, including the Human GenomeProject and the ability to find genetic markers for particulardiseases, have raised difficult ethical dilemmas. Two of the mostpressing issues are preimplantation genetic diagnosis and thegenetic testing of adults. With the technology to identifyinherited diseases in the early embryo comes questions about whichembryos ought to be implanted, which diseases constitute alegitimate moral reason to discard an embryo or become thecriterion for embryo selection, which traits ought parents beallowed to select or test for, and who ought to have access to thistechnology and on what grounds. For example, while there might bewidespread support for testing embryos that might carry the traitfor Tay-Sachs disease or cystic fibrosis, there are troublingquestions about selecting embryos on the basis of sex, nonlethaltrisomes (such as Down's syndrome), or aesthetic or charactertraits that technology may someday be able to screen for. In adultmedicine, genetic tests already exist to detect mutations leadingto some forms of inherited breast cancer and to Huntington'sdisease. Here, questions arise about privacy of health careinformation, psychological impact, stigmatization, lack of informedconsent, health insurance access, and familial disclosure. With theadvent of commercial genetic testing centers, patients will soonhave easy access to genetic tests independent of the practice ofclinical medicine, without the benefit of genetic counselingservices, professional psychological support, or adequate, andpossibly accurate, clinical information. The Internet, for example,will likely bring universal access to any genetic test as itbecomes available.
Emerging Issues for the Future
As the twenty-first century unfolds, new and expanding areas ofresearch will require increasing attention to their related ethicalaspects.
Neuroethics.
Knowledge about the human brain holds much promise and offersmuch needed hope to those who suffer from disorders of the brainand mind. The relative accessibility of the brain throughbiochemical, electrical, and magnetic stimulation, as well assurgery, makes neurological interventions tempting as knowledge ofbrain structure, wiring, and chemistry grows. Nevertheless, therehas been little systematic analysis of the ethical implications ofthe revolution in the brain sciences. This revolution raisesnumerous ethical questions and issues:
The \"essence\" of personhood and identity
The relation between physiological structures and higherfunctioning (\"mind\" or \"self\")
The ways in which abnormalities in the brain might account foratypical or antisocial human behavior
The acceptability of using pharmaceuticals, implants, or otherinterventions to enhance innate traits such as memory, attentionspan, or musical ability
The legitimacy of intervening to alter aspects of personality,mood, or emotion; to assess the effectiveness of treatments orincarceration in modifying criminal behavior; or to detectpredispositions to both desirable and undesirable behavior inpersons who cannot themselves consent
New knowledge of the brain will soon have an enormous impact onthe legal and penal systems. How to integrate knowledge of thebrain into the practice of forensics, the prosecution of personsaccused of crime, and the screening of those seeking parole are allissues likely to become pressing in the not-too-distant future.Equally controversial will be the use of new knowledge about thebrain in the detection and prevention of the onset of undesirablebehavior in adolescents and children and in trying to improve orenhance their capabilities and skills.
Eugenics.
While there has been much attention in bioethics to the mappingof the human genome and to the nuclear transfer techniques used toclone Dolly the sheep and other animals, the most provocativegenetics-related issue facing society during the first half of thetwenty-first century is likely to be to what extent ought humansdesign their children. Rudimentary steps toward making eugenics areality are all around us.
The finalization of a crude map of the human genome and otheranimal and plant genomes means that medicine will soon have at itsdisposal a huge amount of information about the contributiongenetics makes to a wide variety of traits, behaviors,Page217Â Â | Top of Articleand phenotypic properties. Inaddition primitive efforts to introduce genes into the cells of thehuman body through gene therapy will be refined to the point atwhich genetic surgeons should be able to introduce targeted geneswith specific functions into both somatic cells (cells in aperson's body) and germ-line cells such as the stem cells in thetesticles that create sperm in a man's body. And the ability toanalyze the genetic makeup of sperm, eggs, and embryos has alreadyled to some infertility clinics offering genetic testing fordiseases as a part of their standard care for their clients. Thismeans that parents of tomorrow, both infertile and fertile, willincreasingly look to medicine to diagnose potential problems andrisks before babies and children are created. The issue will not bewhether humans should design their children but to what extent andwith what if any limits on how far one may go to improve, enhance,and optimize them.
When should a person die?
Another fascinating emerging ethical issue is whether humanityshould seek to control the time of death. It is one thing to agreethat individuals who are dying have the right to withdraw or notinitiate medical treatments. It is quite a different matter to saythat someone who is not terminally ill but is suffering from aterribly disabling chronic condition, a severely diminished qualityof life, or the prospect of decades of life in a state of dementiaor extreme frailty should have the right to medical ortechnological assistance in dying as is already the case in theNetherlands, the state of Oregon, and Colombia. The focus of thesedebates, however, has been almost exclusively the terminally ill.As the population of the world ages over the course of thetwenty-first century, more and more persons may begin to ask ordemand the right to control the timing of their death, whether theyare