Abstract and Keywords
Bioethics and biomedical ethics are defined. Common bioethical concepts, exemplary moral values, fundamental ethical principles, general ethical theories, and approaches to moral reasoning are reviewed. The scope of topics and issues, the nature of practice situations in bioethics, and social work roles on organizational bodies that monitor and respond to bioethical issues are summarized, as are trends in bioethics. Practice contexts, from beginning to end of life, are highlighted with biopsychosocial facts, ethical questions and issues, and implications for social work—a profession uniquely positioned in giving bioethics a social context.
Bioethics is a multidisciplinary field encompassing the traditional clinical health care professions and the academic and legal professions. The field of bioethics focuses on ethical issues in health care. Ethics, a branch of philosophy, involves “ought thinking”—what should or should not be done with respect to people. Distinct from but related to professional standards and codes of ethics, philosophic ethics is a systematic discussion of morality, of right and wrong conduct. Bioethics is “the systematic study of the moral dimensions—including moral vision, decisions, conduct, and policies—of the life sciences and health care, employing a variety of ethical methodologies in an interdisciplinary setting” (Reich, 1995, p. xxi). Bioethics includes biomedical ethics, which is one type of applied ethics, or when ethical theories and principles are applied to practical and clinical problems arising in health care practice, delivery, research, and policy (Beauchamp & Childress, 2013). Bioethics is both a theoretical and clinical pursuit.
Respect for people, life, and liberty are exemplary moral values in bioethics. Autonomy (right to freedom in choices and actions), beneficence (duty to benefit the welfare of patients), nonmaleficence (obligation to do no harm to patients), and justice (fair appropriation of burdens and benefits) are fundamental principles in biomedical ethics (Beauchamp & Childress, 2013). Principles are informed by normative ethical theories ranging from deontological or non–consequentialist theories (Kantian and rights based approaches), which define actions as inherently right as a matter of principle, duty, or right, to teleological or consequentialist theories (utilitarian ethics), which define right actions as those that attain the best outcomes or most desirable consequences. Justice, as one of the principles of biomedical ethics, employs the ethical concept of distributive justice, for which there are four universal conceptions: to each equally (egalitarian), to each according to need (utilitarian), to each according to merit (libertarian), and to each according to community-derived standards (communitarian). Ethical analysis at the level of general principles is referred to as principlism. Other approaches to moral reasoning that are more contextual in focus include virtue or character-based ethics (emphasizes the qualities of character of individuals who make the choices), feminist ethics or the ethics of care (values community, human connectivity, and caring relationships), narrative ethics (attends to stories, history, identity, and voice of individuals), situational ethics (do the most loving thing), and casuistry or case-based ethics (considers particular case facts and circumstances).
The scope of topics in bioethics ranges from beginning to end of life, encompassing ethical issues such as sanctity vs. quality of life, privacy and confidentiality vs. duty to inform or warn, truth telling vs. deception or benevolent lies when patients have a right to know the truth about their diagnosis and prognosis, efficiency vs. (e)quality of care, and primacy of individual vs. the common good in biomedical research and resource allocation. Such issues often involve hard choices, marked by competing values, principles, rights, and duties, and may produce situations with practical if not moral dilemmas, requiring ethical analysis and decision-making. Adherence to the NASW Code of Ethics and a strong personal and professional identity is needed to manage conflicting moral claims, rights, and duties that characterize practice situations in bioethics.
Practice situations in bioethics are psychosocial, biomedical, and medico-legal in nature. Psychosocial situations include, for example, issues of quality of life, discussing advance directives, limits of confidentiality, patient-family-provider values, and interpersonal conflict; biomedical situations encompass issues of medical negligence, pain control, treatment futility, and withholding or withdrawing of treatment (Foster, Sharp, Scesny, McLellan, & Cotman, 1993), as well as issues involving moral aspects of healthcare technology such as genetic engineering and gender selection (Farrelly, 2009). Medico-legal situations include, for example, issues of decision-making capacity, competency, guardianship, and HIPAA compliance. Social workers and bioethicists, along with others on the health care team, blend descriptive (what is?) and normative (what ought to be?) perspectives to elucidate morality of clinical actions and outcomes (Foster & McLellan, 2002).
Social work contributes to cases involving ethical issues at the organizational level, such as mediating patient–staff conflict and minimizing the negative impact of managed care and cost-containment on quality health care. Relevant is a social work ethics audit (Reamer, 2001) for promoting ethics-related policies and procedures and minimizing ethics-related risks in health care settings (Kirkpatrick, Reamer, & Sykulski, 2006). Organizational bodies that monitor and respond to bioethical issues include hospital ethics committees (HECs) and institutional review boards (IRBs). As members of HECs, social workers take part in committee functions of ethics education, policy-development, and case consultation and review (Furlong, 1986). Social work contributes to all three functions, although case consultation and review has been found to be most central to its role (Csikai & Sales, 1998); for example, social workers may consult on cases involving questions with respect to end of life options and preferences, and consult as advocates on behalf of patients and families regarding health disparities based on race, gender, class, sexual orientation, and HIV status. Social workers with their person-in-environment framework contextualize ethical decision-making by including facts about the patient's environment—the family and its culturally related values, beliefs, and rituals associated with decisions about health, illness, and treatment. As members of IRBs, social workers serve both researchers and participants. They ensure accountability of researchers by reviewing submitted studies; in addition to the quality and scientific merit of a study, of concern are ethical issues of informed consent, confidentiality, risks and benefits, coercion, and conflicts of interest (financial or otherwise). As patient advocates, attentive to the lived experience in clinical trials, social workers help evaluate, monitor, and mange risks inherent in biomedical research.
More than a decade ago, Jonsen (2001) asserted that “renewed concern over the ethics of genetics, the organization and financing of health care, and the promotion of public health cannot be pursued without a more robust appreciation of social ethics” (p. 23). Jonsen proposed a moral perspective of social responsibility, which resonated with calls for broadening the bioethics agenda (Brock, 2000) and giving bioethics a social context (Hoffmaster, 2001). Keenan (2005) commented on, a shift in perspective from the private world, as in traditional clinical bioethics and its focus on biomedical advances and issues arising in physician–patient relationships, to the public world, as in public health and its focus on epidemiological measures of population sectors, necessitating a turn from philosophical to empirical bioethics. According to Kleinman (1999), this requires adapting ethical deliberation to local contexts and attending to local moral processes, utilizing an ethnographic mode of doing bioethics. Ultimately, recommended is an empirical-normative collaboration to ensure a link between empirical research and normative analysis (Salloch, Schildmann, & Vollmann, 2012).
The field of bioethics is still largely influenced by its origins in biomedical and clinical research ethics (Sherwin, 2011). Yet the identity of bioethics remains in flux as it is coming of age politically (Campbell, 2011). Concerns about bioethical challenges, interests, and priorities in a global world are increasing. As an alternative to embedding in the biomedical agenda, there are calls to focus on problems of injustice and violation of human rights (Macklin, 2000), threats of religious fundamentalism, and the pervasiveness of market values that weaken human relationships (Biller-Andorno, 2011). Beyond modern biomedicine, the doctor-patient relationship, and the language of bioethics, emerging are voices from feminist bioethics, developing world bioethics, and public health ethics, challenging the field of bioethics to address the larger systemic picture−the health and life of populations locally and globally, including health threats implicit in social and economic injustice, militarism, environmental damage (Sherwin, 2011), and inequality in HIV care (Johansson & Norheim, 2011). Healthcare social workers demonstrate leadership addressing ethical issues pertinent to HIV/AIDS, as well as providing policy and legislative responses and program development in the HIV context (Linsk, 2011). Also, social workers, along with other health care workers, face a challenging role in addressing suspicion and mistrust of vaccination programs for high risk children among religious fundamentalist groups in third world countries (Warraich, 2009). Given the social work profession’s rich history in international social work (Hokenstad, 2008; Midgley, 2001), social workers are in position to think and work globally as well as locally with the morally complex biomedical issues arising in health care from the beginning to the end of life.
Bioethical issues in reproduction draws attention to three primary areas: assisted reproductive technologies, prenatal screening and diagnosis, and abortion.
Assisted Reproductive Technologies
Egg and sperm donation, in vitro fertilization, freezing or transfer of human embryos, selective embryo reduction, pre-implantation genetic diagnosis, and surrogacy have increased both options for and complications in family planning for infertile couples and individuals—heterosexual, gay, and lesbian. That fertility treatments are followed by an increase in high-risk multiple pregnancies, maternal mortality, preterm births, low birth-weight (The ESHRE Capri Workshop Group, 2000; Luke & Brown, 2007; Blondel et al. 2002), and birth defects begs the question of prevention or reduction of such pregnancies and who decides (Pennings & deWert, 2003). Reproductive autonomy is increasingly at stake as technology is implicated in rising cesarean rates worldwide (Burrow, 2012).
Potential exploitation of surrogate mothers, especially poor women, underscores the imbalance of burdens and benefits associated with costly assisted reproductive technologies. Also, financial incentives in the recruitment of oocyte or egg donors raise the ethical debate of just compensation vs. potential harms to the donor, especially when coercion by payment may jeopardize informed consent (Steinbrook, 2006). The right of ex-wives to gestate frozen embryos created with former husbands has been litigated (Stowe v. Davis, 1993), and embryo disposition and divorce with all couples, including gay and lesbian couples, remains a challenge to the courts despite use of clinic consent forms and contracts outlining embryo ownership and adoption (Forman, 2011). Additionally, litigated are genetic rights in claims of parenthood and visitation privileges in surrogacy contracts (Matter Baby, 1988; Johnson v. Calvert 1993). Patchwork laws on sperm and egg donor anonymity in third party conception raises issues of privacy and confidentiality (Morris, 2006): should donors and surrogates be given confidentiality but not anonymity?
The potential for selective breeding renews fears of eugenics and genetic discrimination rooted in racism, sexism, and economics. Conceiving a child as a future donor of bone marrow to a sibling with terminal cancer (Pennings, Schots, & Liebaers, 2002) also raises the question whether children should be viewed as reproductive means. Social workers in fertility clinics are being challenged to re-examine the limits of procreative liberty, the ethics of which requires attention to culture, gender, and power, especially the social position of women and children in society.
Prenatal Screening and Diagnosis
Early diagnostic methods such as amniocentesis, ultrasound, fetoscopy, and genetic testing provide considerable information to diagnose abnormal fetuses, but not without a corresponding increase in maternal–fetal conflict and the question of whether or not to terminate a pregnancy. The option of terminating pregnancy raises issues of equal and intrinsic value of the fetus and mother and what constitutes a meaningful life and for whom. If there is fetal surgery, does the fetus have patient rights and thus personhood?
Presence of genetic defects such as spina bifida, Down syndrome, cystic fibrosis, muscular dystrophy, sickle-cell anemia, and Tay-Sachs are examples of pregnancies in which interests of mother and fetus may not coincide. The technological breakthrough of mapping a baby’s genome in the womb has the potential to screen for over 3,000 genetic disorders (Roberts, et al. 2012) and significantly reduce the number of miscarriages due to amniocentesis. This breakthrough is predicted by Dr. Arthur Caplan to shift the debate over abortion and disabilities to whole genome genetic testing (Conley, 2012).Prenatal genetic testing raises issues of privacy, insurance risks, and stigmatization. Social workers in prenatal clinics weigh the benefits and harms to mother, fetus, and to society, maximizing benefits to all parties.
Although a constitutionally protected right to abortion in the first trimester was held in the 1973 Roe v. Wade decision and reaffirmed in the 1992 Planned Parenthood v. Casey decision, failure to achieve a national consensus on abortion is related to unresolved definitions of when life, personhood, and viability begin. Is not prevention of grave harm to the mother justification enough for partial-birth abortions? Should abortion for reasons other than life-saving procedures such as situations of rape, incest, and significant fetal anomalies be an unchallenged right? Required waiting periods, parental consent, and lack of abortion facilities are associated with increases in medical risks, especially for young and poor women of color; women living below the federal poverty level have more than 4 times the abortion rate than women above 300% of poverty level (Guttmacher Institute, 2006). Social workers in abortion counseling weigh the risks, burdens, and benefits of abortion decisions in the context of conflicting interests—those of the patient, family, and community.
Unintentional injury, homicide, and suicide are the leading causes of adolescent deaths (Park, Mulye, Adams, Brindis, & Irwin, 2006), with obesity fast becoming a chronic illness among adolescents (Sinaiko, Donahue, Jacobs, & Prineas, 1999). And, despite a decrease in teenage sexual activity, pregnancy, and abortion rates since the mid-1990s, U.S. teen birth rates remain higher than those of other industrialized nations (Kearney & Levine, 2012); according to the Guttmacher Institute (2006), teens are more likely to delay having an abortion and thereby increase medical risks. Among sexually active high school students, issues persist with respect to sexual encounters that include violence and substance abuse, and an increase of AIDS, especially among minority and female youth (Kaiser Family Foundation, 2006). Many social workers who work with adolescents encounter challenging ethical dilemmas when teen clients refuse to permit social workers to disclose to parents information about the teen’s drug abuse, high risk sexual activity, and pregnancy.
Human papillomavirus (HPV), the most common sexually transmitted infection, can lead to cervical cancer, the second leading cause of cancer death in females (Daley & McDermott, 2007); adolescents are at the greatest risk of acquiring the infection, and it is estimated that 33.8% of 14 to 24 year olds are infected (Dunne, et al, 2007). Controversy surrounds a mandated vaccine, as HPV is a sexually transmitted virus and considered by those advocating abstinence to be a result of a life style decision. Yet, a mandated vaccine challenges the autonomy of girls and women to make personal health decisions, evoking fears of gender bias (Morin, 2011). What is society's responsibility to adolescents who engage in high-risk health behaviors, especially when such behaviors may not be the result of informed, reasoned, and voluntary choices?
Many youth are homeless or runaways, with multiple health and mental health needs, and are seeking confidential services for problems that “should be viewed as a human rights issue with roots in poverty and victimization” (Farrow et al., 1991, p. 717). Indeed, adolescents are more vulnerable than adults in accessing health care because they are less likely to have health insurance, transportation, information about services, and are more likely to have fears about seeking health care (Kaiser Family Foundation, 2006). That a 16-year-old cancer patient's legal fight to forgo a second and more intensive round of chemotherapy ended in victory for the adolescent (Washington Post, 2007) challenges the legal presumption of a minor's incompetence and raises the issue of benevolent paternalism. In such situations, on whose behalf does a social worker act—the adolescent in terms of autonomy, the parents or legal guardian in terms of the right to informed consent or the health team' in terms of preserving professional integrity?
Altruism in organ donation has been insufficient in closing the gap between supply and demand for donor organs. Proposals to close the gap range from presumed and required consent to use of financial incentives (Burrows, 2004). Ethical issues pertain to donor and recipient selection criteria, informed consent, burdens and benefits, safety and efficacy of transplant, compliance with transplant protocols, and resource allocation. Issues vary depending on whether a donor is living or dead; living donors are used for skin, kidneys, and bone marrow, whereas deceased donors are used for organs such as corneas, heart, liver, pancreas, kidneys, and lungs. Related living donors may be coerced by family pressure. With pediatric donors, informed consent is difficult because of their maturity level and decisional capacity. In cadaver donations, defining death is a unique ethical issue: “cadaveric donors, although legally dead, appear very much alive; thanks to support systems their skin is warm, their color is good, and they continue to digest and eliminate” (Davis, 1993, p. 119). Organ procurement and standards of death are inextricably connected. Should brain-dead patients, either infants with anencephaly or adults in a persistent vegetative state (PVS), be kept on life support to be a source of vital organs? Should the “dead donor rule” be revised to support premortem organ retrieval? When does the use of preconditioning agents (e.g. physical or ischemic precondition and heat treatment, and pharmacological or the administration of drugs, cytokines,and gene transfer techniques) to improve target organs cross the boundary from maintenance to treatment, and what are the implications for patient autonomy and informed consent (McNally, Harrison, & Wigmore, 2005).
That costly transplants are beyond the reach of many people raises questions of distributive justice: should transplantation be based on medical need, merit, ability to pay, or universal entitlement? Inequities in access to bone marrow and peripheral stem cell transplants on the basis of race (CIBMTR, 2007) and in allocation of organs on the basis of race, gender, ethnicity, income, and proximity to a transplant center serve as a barrier in transplantation (Douglas, 2003). Eligibility based on psychosocial criteria has been explored in bone marrow (Foster et al., 2006) and solid organ (Dobbels et al., 2001; Leveson & Olbrisch, 1993) transplantation. Compared to White patients, Hispanics listed for heart transplant are at higher risk of dying on the wit-list, whereas Black patients have a higher post-transplant mortality (Singh et al., 2012). Beyond screening for psychosocial risk factors and conducting informed consent interviews in transplantation, social workers can educate the public and advocate for equitable organ procurement and allocation policies; whereas a natural scarcity of organs requires rationing, political decisions about lack of resources creates disparities, and ethical dilemmas for health care professionals (Bodenheimer & Grumbach, 2002).
End of Life
Bioethical issues at the end of life surround definitions of death, withholding and withdrawing of life support, and assisted suicide and euthanasia.
Definitions of Death
The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1981) recommended that “An individual who has sustained either (a) irreversible cessation of circulatory and respiratory functions or (b) irreversible cessation of all functions of the entire brain, including the brain stem, is dead” (p. 2). This rules out the definition of death in terms of higher-brain (cerebral) death, which characterizes people in a PVS. At issue for both advocates and critics of this definition of death is the question of personhood. Should definition of death be expanded to include those who have never had or who have lost their capacity to think, feel, or be capable of meaningful relationships? Unresolved definitions of death and when personhood ends raise ethical issues in the use of life supports.
Withholding and Withdrawing Life Support
Artificial nutrition and hydration are considered forms of life support and can be used to accelerate death or prolong life. Are withholding and withdrawing life support morally equivalent? When is either optional or obligatory? Symbolism of food and water is central to the ethics of forgoing life support, as are definitions of death, medical futility, and decisional capacity, especially in patients with progressive dementia and neurological disease. Should neurologically impaired people who find life burdensome and without discernible meaning be kept on life support? Should family wishes to prolong life be upheld when patient's advance directives are to the contrary? Public intrusion into the life and death of Terri Schiavo in 2005 is a reminder that even at life's end the personal is political; memorable is how biopolitics, religious rhetoric, and the media weighed in on the end of life debate (Pence, 2008; Perry, 2006). Consistent with landmark decisions in the 1976 Quinlan case and the 1990 Cruzan case, both of which recognized rights of dying patients and substituted judgment, the Schiavo case underscores (but not without controversy and national angst and debate) health professionals and family members have an obligation to honor withholding or removal of treatment that does not hold promise for quality of life consistent with a patient's wishes or advanced directives. An advance directive is an oral statement or a formal written document (living will or durable power of attorney for health care) indicating an individual's choices regarding end-of-life care if and when the individual becomes incapacitated. Advance Directives and Advance Care Planning: Report to Congress indicates only 18–36 percent of Americans have completed advance directives (U.S. Department of Health and Human Services, 2008). More recently, research among Maryland residents revealed only 34 percent had advance medical directives in place (Pollack, Morhaim, & Williams, 2010). Similarly of a large majority (82%) of Californians who said it was important to have end-of-life wishes in writing only 23 percent said they had done so (California HealthCare Foundation, 2012). Use of advance directives varies by care setting, race, ethnicity, and culture. Barriers are related to patients and their families, experiencing and training of healthcare providers, utility of advance directives, and the organization of healthcare. Social workers clarify advanced directives, advocate for a patient's right to choose, provide supportive counseling, act as liaison to the health care team, and encourage family involvement and the exploration of end-of-life options and resources (NASW Press, 1994).
Assisted Suicide and Euthanasia
To die with dignity is a moral value. Is there a time when being alive no longer means having a life capable of meaning? At that time, is physician-assisted suicide death with dignity? Is there a moral difference between killing (active euthanasia) and letting life go by omitting therapeutic treatment (passive euthanasia)? Are age and chance of survival, especially among underinsured or uninsured terminally ill people, just criteria for passive euthanasia? When does a competent patient's right to self-determination include right to choose death over life? The U.S. Supreme Court in 1997 rejected prior arguments (Compassion In Dying v. State of Washington, 1996; Quill v. Vacco, 1996) in a decision that said a fundamental right to die did not exist in the Constitution but that individual states could grant that right to its citizens and that the distinction between physician-assisted suicide and refusing life-sustaining treatment is not arbitrary (Pence, 2008).
Although euthanasia is increasingly being considered a moral option among hopelessly ill people who are dying in pain, distress, and inhumane situations (Emanuel, 1998), the only countries physician involvement in hastening death is legal are Belgium, Switzerland, and the Netherlands. The only states in the U.S. that have legalized physician-assisted suicide is Oregon in 1997, Washington in 2008, and Montana in 2009; American Medical Association and a range of state medical groups are against legalization of physician-assisted suicide (Prokopetz & Lehmann, 2012). An attitude of ambivalence, if not reticence, toward active termination of life prevails nationwide in the helping professions and this is reflected in calls for better pain management and hospice-inspired strategies of caring for terminally ill people. NASW Social Work Speaks has a policy statement on its position concerning end-of-life decisions and social work's role (NASW Press, 1994, pp. 58–61).
Is health care a right or privilege? Should allocation of health care be based on need, merit, age, or chances for survival? What is a just allocation of health care? Such fundamental questions are in effect being addressed in the context of efforts to eliminate significant disparities in health status, care, and outcomes.
Health disparities is defined by the Healthy People 2010 initiative as the “unequal burden in disease morbidity and mortality rates experienced by ethnic/racial groups as compared to the dominant group” (U.S. Department of Health and Human Services, 2000). Inequities in health and health care throughout the life span do not favor poor people of color, as evidenced by increased rates of high-risk pregnancies, higher rates of infant mortality, low-birth-weight babies, and children with congenital defects and disabilities (Oberg & Rinaldi, 2006) Also, according to Newacheck et al. (2003), socioeconomic status accounts for significant disparities in adolescent health and health care. Smedley, Stith, and Nelson (2002) report that diseases that can be prevented or delayed in adults, such as diabetes, hypertension, heart disease, cancer, and AIDS, are diseases for which minority groups are at a much higher risk.
Health disparities based on costs, insurance discrimination, demographics, differential access, and health care delivery factors are increasingly viewed as unjust and a violation of basic human rights and equal opportunity. According to Dr. David Satcher (2012), former Surgeon General of the United States, the Affordable Care Act of 2010 responds in many ways to reduce health disparities, and Healthy People 2020 will strive to “achieve health equity, eliminate disparities, improve the health of all groups, and create social and physical environments that promote health for all.” To the extent health disparities among racial and ethnic minority populations are rooted in social, economic, and environmental factors that threaten well-being, basic human needs, and equal access to health care, it falls within the mission of social work.
Ethical issues in biomedical research pertain to (a) the freedom of patients or subjects to participate in research without coercion (autonomy), (b) the benefit of the research to present or future patients or subjects and society (beneficence), (c) the risk of harm to patients or subjects (non-maleficence), (d) the reasonableness of costs to patients or subjects (justice), and (e) the privacy of patient or subject information (confidentiality) (Kanoti, 1983).The current NASW Code of Ethics includes a substantial section on ethical standards related to social work evaluation and research (Standard 5.02), which addresses the protection of research participants.
Participation in biomedical research is viewed as justified when it is in the best interest of the patient or subject, or when the likely benefits outweigh possible risk of harm. However, with respect to areas of research directly related to patients or subjects, in whose best interests are randomized clinical trials—the individual patient or future patients? In pediatric research, legal presumption of a minor's incompetence raises the question of individual autonomy; whether adolescents should be considered more like children or more like adults depends on their cognitive, emotional, and social maturity, although IRBs in most states utilize the age of under 18 as the age of a minor. Similar consideration is given to inclusion of mentally impaired people in nontherapeutic research, but greater safeguards may be necessary because of social worth criteria; such criteria may be based on perceptions of desirable biological, psychological, and sociological traits and functioning.
Areas of research posing ethical issues indirectly related to patients include finders' fees, or payment to physicians for referral of patients as research subjects, and corporate reimbursement for entering patients into clinical trials testing drugs or products (Shimm & Spece, 1991). Pharmaceutical sponsorship of clinical trials in prisons, may invite exploitation and coercion of prisoners as a vulnerable population and, as a result, undermine informed consent (Beauchamp & Childress, 2013). And research that poses ethical concerns on a more global scale includes the Human Genome Project, which involves mapping the entire gene system to increase the ability to search for and predict, through genetic testing and screening, the future disability of oneself or one's children (McCarrick, 1993). Who should have the option and results of DNA tests revealing presence or absence of a lethal gene? Society's use of this information, particularly by law enforcement officers, employers, and insurers of life, health, and disability, is a significant concern (Murray, 1993). DNA profiling raises fears of genetic discrimination on the basis of cost savings as well as social desirability criteria.
Ethical controversies as well as promising breakthroughs in biomedical research have come with human embryonic stem (hES) cell research and experimentation. Human embryonic stem cells may be used to generate replacement cells and tissue to treat degenerative diseases such as Parkinson's disease, cystic fibrosis, Huntington's chorea, multiple sclerosis, or spinal cord injury (deWert & Mummery, 2003; Hansen, 2002). However, destruction of human embryos is used to derive the embryonic stem cells. This raises questions about the moral status of the embryo and the ethical issue of life itself versus the quality of another's life. And, given the risks and potential harm to donors in egg donation (Steinbrook, 2006), as well as potential for a handsome compensation, is there not a moral difference in informed consent when embryonic stem cells from egg donors are utilized for research instead of reproductive purposes? When is creating embryos for research justifiable?
As we move from biotechnology to nanotechnology —or molecular manufacturing—the gap between science and ethics potentially widens. According to The Nanoethics Group (2007), new drugs that target cancer cells and viruses, repair defective genes (as in gene therapy), and repair cells that can modify the aging process (as in regenerative medicine) bring new challenges with respect to privacy and confidentiality, informed consent, and assessing harms and benefits.
Challenges and Opportunities
Since the first entry on bioethical issues in the 19th edition of the Encyclopedia of social work, shortcomings of managed care and inflationary costs have renewed concerns about organization and financing of health care. This, along with an increased aging population, incidences of chronic illnesses and infectious diseases, and a prevalence of health disparities has led to a movement promoting public health and health care reform resulting in the Affordable Health Care Act of 2010. Paralleling such trends, concerns, and legislation has been a move to broaden the agenda in bioethics, addressing the social determinants of health, adapting ethical deliberation to not only local communities, and moral processes but also the health and life of populations globally.
Social work has a leadership role in advancing this new agenda. Like bioethics, social work, with its dual focus on enhancing individual well-being and promoting social and economic justice, is inherently normative and a moral enterprise. But unlike bioethics, social work has been (and is) anchored in the empirical world—the lived moral experience of poverty, oppression, and discrimination, including inequality in health and health care; social work is committed to social justice as part of its code of ethics. Such a person-in-environment focus and commitment uniquely positions social work in giving philosophical bioethics a social context, locally and globally.
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