Right to Health: A Buzzword in Health Policy in Indonesia

ABSTRACT

The “right to health” operates as a buzzword in Indonesia to frame health policies as beneficial to citizens. Right to health is equated with access to Western biomedical services. Within the policy on partnership between biomedical and traditional midwives, only the biomedical midwife can fulfill the right to health. The “traditional” midwife is reframed as her assistant. Right to health language hides underlying tensions in relationships between these two categories of midwives by presenting the policy as mutually beneficial. Right to health language is effective in the post-Suharto era as it aligns with other incontestable values, including democracy and modernity.     

When Policy Produces Moral Distress: Reclaiming Conscience

For too long, bioethics has followed law in reducing “conscience” to “conscientious objection,” in other words, to laws and policies permitting and protecting refusal. In “Reframing Conscientious Care: Providing Abortion Care When Law and Conscience Collide,” Mara Buchbinder and colleagues draw our attention to one dimension of the problem of reducing conscience to refusal to provide certain forms of medical care: what about the conscience problems experienced by the professionals who are attempting to provide safe, effective health care that includes services that others associate with conscientious objection? In seeking to disrupt a specific medical practice—one that is legal, desired by the patient, and conducted in accordance with medical standards—North Carolina House Bill 854, The Woman's Right to Know Act, and laws like it, appear to be designed to produce moral distress in physicians and other professionals involved in the provision of abortions. For abortion providers in North Carolina and other states, conscientious objection to the mandates of laws like HB 854 isn't a realistic option. So what can bioethics offer to professionals bound by such laws? We can start by reclaiming the idea of “conscience” as something that can say “yes” to providing health care.     

Epigenetics in the Neoliberal “Regime of Truth”

Recent findings in epigenetics have been attracting much attention from social scientists and bioethicists because they reveal the molecular mechanisms by which exposure to socioenvironmental factors, such as pollutants and social adversity, can influence the expression of genes throughout life. Most surprisingly, some epigenetic modifications may also be heritable via germ cells across generations. Epigenetics may be the missing molecular evidence of the importance of using preventive strategies at the policy level to reduce the incidence and prevalence of common diseases. But while this “policy translation” of epigenetics introduces new arguments in favor of public health strategies and policy‐making, a more “clinical translation” of epigenetics is also emerging. It focuses on the biochemical mechanisms and epigenetic variants at the origin of disease, leading to novel biomedical means of assessing epigenetic susceptibility and reversing detrimental epigenetic variants. In this paper, we argue that the impetus to create new biomedical interventions to manipulate and reverse epigenetic variants is likely to garner more attention than effective social and public health interventions and therefore also to garner a greater share of limited public resources. This is likely to happen because of the current biopolitical context in which scientific findings are translated. This contemporary neoliberal “regime of truth,” to use a term from Michel Foucault, greatly influences the ways in which knowledge is being interpreted and implemented. Building on sociologist Thomas Lemke's Foucauldian “analytics of biopolitics” and on literature from the field of science and technology studies, we present two sociological trends that may impede the policy translation of epigenetics: molecularization and biomedicalization. These trends, we argue, are likely to favor the clinical translation of epigenetics—in other words, the development of new clinical tools fostering what has been called “personalized” or “precision” medicine. In addition, we argue that an overemphasized clinical translation of epigenetics may further reinforce this biopolitical landscape through four processes closely related to neoliberal pathways of thinking: the internalization and isolation (aspects of liberal individualism) of socioenvironmental determinants of health and increased opportunities for commodification and technologicalization (aspects of economic liberalism) of health care interventions.     

Market Language,Moral Language

Those who advocate higher out‐of‐pocket spending, especially high deductibles, to keep health care costs better controlled without losing quality use market language to talk about how people should think about health care. Consumers—that is, patients—should hunt for bargains. Clip coupons. Shop around. Patients need to have more “skin in the game.” Consumer‐patients will then choose more carefully and prudently and use less unnecessary health care. Unfailingly, “skin” refers to having money at stake. Usually, those arguing for high deductibles express dismay or frustration that patients do not face the full (“true”) cost of the health services they receive. Unfortunately, a lack of price transparency, the need to unbundle bundled groups of services to discover total price, and the challenge of validly and reliably measuring and disclosing quality make shopping for health care a challenge for even the savviest patient. Urgency, fear, and sickness that impairs peak cognitive function and other aspects of emotionally laden decision‐making, even when “shared” with a physician, add obstacles to coupon clipping and tire kicking. Who has more at stake in health decisions than patients? Whose flesh is literally, not just figuratively, at risk?     

Bystander Ethics and Good Samaritanism: A Paradox for Learning Health Organizations

In 2012, a U.S. Institute of Medicine report called for a different approach to health care: “Left unchanged, health care will continue to underperform; cause unnecessary harm; and strain national, state, and family budgets.” The answer, they suggested, would be a “continuously learning” health system. Ethicists and researchers urged the creation of “learning health organizations” that would integrate knowledge from patient‐care data to continuously improve the quality of care. Our experience with an ongoing research study on atrial fibrillation—a trial known as IMPACT‐AFib—gave us some insight into one of the challenges that will have to be dealt with in creating these organizations. Although the proposed educational intervention study placed no restrictions on what providers and health plans could do, the oversight team argued that the ethical principle of beneficence did not allow the researchers to be “bystanders” in relation to a control group receiving suboptimal care. In response, the researchers designed a “workaround” that allowed the project to go forward. We believe the experience suggests that what we call “bystander ethics” will create challenges for the kinds of quality improvement research that LHOs are designed to do.     

Two dreams

Two disputes are waged simultaneously in the pages of this issue of the Report, but it might be easy to lose track of the second. The obvious dispute is about resource allocation in health policy: the question is whether limited health care resources should be spent on identified victims—people whose struggles with disease have made the news—when the same investment might provide more help if spent on a larger number of unknown, merely “statistical” people. The second, less easily noticed dispute is about the challenge of crafting public policy when the arguments pro and con are not decisive.     

The First Thousand Days: Motherhood,Scientific Knowledge,and Local Histories

ABSTRACT

Since 2013, South African nutrition policy focuses on “the first thousand days,” (conception to two years), informed by Developmental Origins of Health and Disease research. Drawing on ethnographic research, we show how policy foregrounds certain categories of persons and casts “the maternal” as a time frame for interventions to secure future health and argue that this constitutes a “knowledge effect” – the outcome of framing questions in a particular way and with specific knowledge horizons.     

Trust in American Medicine: A Call to Action for Health Care Professionals

Medical mistrust has a well-documented harmful impact on a range of patients’ health behaviors and outcomes. It can have such egregious downstream effects on so many aspects of medicine—from clinical trial participation to health care use, timely screening, organ donation, and treatment adherence—that it is sometimes described as one of the social determinants of health. In the article “Trust, Risk, and Race in American Medicine,” Laura Specker Sullivan makes the compelling case that trust is essential to building a therapeutic alliance in which effective, high-quality health care can be delivered and received. As a complement to her suggestion that health care providers take an active role in mitigating mistrust by demonstrating “not only their capacity to be honest and forthright but also their ability to respond to the potential truster's needs,” we recommend that key health care professionals commit to five actions.     

Trump's Abortion‐Promoting Aid Policy

On the fourth day of his presidency, Donald Trump reinstated and greatly expanded the “Mexico City policy,” which imposes antiabortion restrictions on U.S. foreign health aid. In general, the policy has prohibited U.S. funding of any family‐planning groups that use even non‐U.S. funds to perform abortions; prohibited aid recipients from lobbying (again, even with non‐U.S. money) for liberalization of abortion laws; prohibited nongovernment organizations from creating educational materials on abortion as a family‐planning method; and prohibited health workers from referring patients for legal abortions in any cases other than rape, incest, or to save the life of the mother. The policy's prohibition on giving aid to any organization that performs abortions is aimed at limiting alleged indirect funding of abortions. The argument is that if U.S. money is used to fund nonabortion programs of an abortion‐providing NGO, then the NGO can simply shift the money thus saved into its abortion budget. Outside the context of abortion, we do not reason this way. And the policy's remaining three prohibitions are deeply troubling.     

Rough Justice

In the Perspective in this issue of the Hastings Center Report (September‐October 2017), Barron Lerner contrasts the “true believers” in public health schools—“people willing to crusade for any program designed to reduce morbidity and mortality”—and the political operators in the “real world” who often stand in their way. Lerner takes us through some of those programs, both past efforts that were successful and widely accepted and current endeavors that look promising but face all sorts of obstacles. Keep the faith, he admonishes. The “winds change and public health efforts currently out of favor can once again gain support.” Lerner's meditation‐cum‐exhortation is one of six essays in this issue about how to set and pursue public health goals in light of the gap between ideals and reality.     

When Public Health Becomes Politicized

Perhaps nothing symbolizes the current polarized political climate in the United States more than the world of public health. Public health schools and health departments are full of “true believers,” people willing to crusade for any program designed to reduce morbidity and mortality. But in the “real world,” proven programs and strategies—such as gun‐control measures, universal vaccination, and improved traffic safety—are routinely thwarted. Why do critics oppose efforts to improve the public's health? History can provide some answers.      

From “Personalized” to “Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine

Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this movement usually offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more “personalized,” “predictive,” “preventive,” and “participatory” than the medical status quo. Initially, it was personalization that seemed to best sum up the movement's appeal. By 2012, however, powerful opinion leaders were abandoning “personalized medicine” in favor of a new label: “precision medicine.” The new label received a decisive seal of approval when, in January 2015, President Obama unveiled plans for a national “precision medicine initiative” to promote the development and use of genomic tools in health care.     

Heart and Soul

The lead article in this January‐February 2021 issue—the first of the Hastings Center Report's fiftieth year of publication—does not set out to change medicine. It tries instead to understand it. In “A Heart without Life: Artificial Organs and the Lived Body,” Mary Jean Walker draws on work in phenomenology and on empirical research with people who have received artificial heart devices to argue that such devices may have two very different effects on how a patient experiences the body and the self. Several other pieces in this issue address the ongoing slew of patient care and health policy problems surrounding the Covid‐19 pandemic, and a special report titled Democracy in Crisis: Civic Learning and the Reconstruction of Common Purpose considers the requirements for public involvement in policy‐making about bioethical issues.     

Unhealthy Partnerships and Public Health: Breaking Free of Industry

In the ambitious new book The Perils of Partnership: Industry Influence, Institutional Integrity, and Public Health, Jonathan Marks argues that far too much baggage is being piled on an old workhorse, conflict of interest. It’s an important concept, he asserts, but public‐sector actors can transgress their ethical obligations even when their relations with industry don’t create conflicts of interest. Yet policy‐makers have been immersed in public‐private partnerships for so long that they do not see the broader implications of such relationships. Marks aims to move the discourse from reassuring terms like “engagement” and “inclusiveness” to concepts that capture the problematic side of the liaisons, like “webs of influence” and “agenda distortion.” Above all, he issues a challenge to public health policy‐makers: Ditch the comfortable hand‐in‐hand industry relationships, which prioritize efficacy over ethics, threatening both the public’s health and the integrity of public health institutions. Adopt instead a paradigm that is “mano a mano,” involving tension, struggle, and, at times, direct conflict with private industry.     

How Should We Model Rare Disease Allocation Decisions?

When health budgets are insufficient to provide care for all, allocating resources to treat a person with a rare and expensive disorder entails that we cannot treat at least one person with a more common, less expensive disorder. Since any allocation scheme will entail such trade‐offs, how should prudent policy‐makers, concerned about justice and fairness, allocate their community's health resources? In their article in this issue of the Hastings Center Report, Emily Largent and Steven Pearson frame this problem as a conflict between the “rule of rescue” and utilitarian allocation schemes that try to maximize the benefits produced by a given budget. In his article, Norman Daniels discusses the related problem of the “identified victim bias.” I doubt that the problem of crafting an equitable health policy regarding orphan diseases maps onto either of these factors in a way that sheds light on the key moral issues.     

Unintentional Injury,Supervision, and Discourses on Childproofing Devices

Unintentional injury prevention research focuses on parental supervision as critical to reducing toddler injury. We examine how the promotion of childproofing—as a mode of supervision—sells mothers “peace of mind” while also increasing “intensive mothering” and the “privatization of risk.” Drawing on the childproofing literature and meaning centered interviews with mothers of toddlers and childproofing business owners, we argue that the connection made by these groups between childproofing and “good parenting” ultimately obscures how this form of harm reduction economically and socially individualizes responsibility for child care.     

Dr. Douchebag: a tale of the emergency department

“I'm not afraid of dying,” he says, despite his plea on arrival. “Listen up, douchebag. Are you calling my cousin or what?” The emergency department might be the only sphere of human exchange where one party—patients (and sometimes family)—are permitted to insult, threaten, and even spit at the very people on whom they depend for help, while the offended parties—physicians, nurses, and other health care providers—must not only tolerate the abuse, but treat their tormentors. Does the ED's collective duty to greater numbers of patients demand a revised ethos of tough love for extreme cases of misbehavior? Can we ask these patients to leave without legal recourse after extending genuine, compassionate efforts to participate in their care—barring evidence of a medical explanation for their toxic comportment or a mental illness that puts them at risk of harming themselves or others?     

Vulnerable Children in a Dual Epidemic

Two epidemics—Covid-19 and opioid use disorder (OUD) —are creating short- and long-term mental and physical health risks for vulnerable children and adolescents. Information about the risks to children from exposure to the coronavirus is still fragmentary, but even many healthy children are not getting appropriate health care, such as vaccinations or monitoring of developmental milestones during the Covid-19 pandemic. Children living in poverty are at heightened risk. Youngsters who are already dealing with OUD in their families—2.2 million as of 2017—face serious consequences stemming from trauma and stress. Although not officially designated by the Centers for Disease Control and Prevention as “adverse childhood experiences” (“ACEs”), these situations meet the CDC's criteria for inclusion, such as death or separation from a parent. It is important to recognize and meet the needs of all these children now and not just when the long-term consequences become apparent.