Phenomenology in medicine’s main contribution is to present a first-person narrative of illness, in an effort to aid medicine in reaching an accurate disease diagnosis and establishing a personal relationship with patients whose lived experience changes dramatically when severe disease and disabling condition is confirmed. Once disease is diagnosed, the lived experience of illness is reconstructed into a living-with-disease narrative that medicine’s biological approach has widely neglected. Key concepts like health, sickness, illness, disease and the clinical encounter are being diversely (...) and ambiguously used, leading to distortions in socio-medical practices such as medicalization, pharmaceuticalization, emphasis on surveillance medicine. Current definitions of these concepts as employed in phenomenology of medicine are revised, concluding that more stringent semantics ought to reinforce an empirical phenomenological or postphenomenological approach. (shrink)

Neglected diseases are severe conditions that mainly affect the world's poorest people. Those suffering from neglected diseases are mostly suffering from tropical infections that have failed to receive priority in pharmaceutical research and development programs, as well as in public health policies aimed at improving availability and access to preventive, diagnostic and curative medicine. The World Health Organization has issued a number of documents directing attention to the plight affecting one third of the world's population, assisted by active support from (...) private organizations, notably the Bill and Melissa Gates Foundation, but the overall situation remains dismal. In the wake of major socioeconomic processes including globalization, steadily growing economic disparity, healthcare inequality, the instability created by rogue states and terrorism, as well as massive migration, and epidemic outbreaks, the features of neglected diseases have been changing. Neglected populations affected by tropical diseases are suffering increasingly from non-infectious degenerative conditions and disabilities due to untreated chronic maladies. Pockets of poverty and neglect can also be detected in high-income countries, contributing to the emergence of new diseases and the reemergence of infections believed to be disappearing such as tuberculosis and the measles. Included in the issues of neglect are rare diseases, mostly of genetic origin, affecting a small number of patients that suffer from multiple life-shortening functional impairment and organ defects. Effective medicines are extremely expensive, allegedly because research and development of appropriate drugs is resources and time consuming, requiring exorbitant prices to recoup investment from a small number of consumers. Bioethics has been tardy in addressing the suffering and destitution of neglected and rare diseases. Convinced that permanently repeated denunciations blunt the sensitivity towards suffering, whereas statistics are bloodless and unable to elicit commitment, this book attempts to explore a different strategy. In an upstream approach, bioethics needs to engage in ethnographic fieldwork that confronts and shares the context in which people suffer, vividly presenting what epidemiological research has blunted into statistical data. Additionally, a downstream approach is suggested, requiring bioethics to vigorously and openly denounce unethical biomedical and pharmaceutical research, misdeeds in registration and marketing of drugs, and misalignment of policies with the unmet healthcare needs of the destitute. More than being critical observers, bioethicists ought to shed lurking conflicts of interests and seek active participation in planning research and public healthcare practices aimed at improving the lives of medically neglected populations. (shrink)

Latin American countries have slowly enacted laws decriminalizing abortion in three circumstances: Life‐threatening risk for the pregnant woman, extra‐uterine non‐viability of malformed foetus, and pregnancy due to rape or incest. Chile is one of the last countries to adopt such a law, formulated in an increasingly restrictive format. Conservative politicians and Church‐related healthcare institutions promptly announced individual and institutional conscientious objection based on the right of private facilities to obey their ideology and personal moral integrity. Juridical consultations and Constitutional Court (...) rulings allowed private hospitals to uphold their objection even if contracted to provide some public health services. Under these conditions, only a few hundred women requested and obtained a legal abortion, while an estimated 100,000 continued to depend on unsafe procedures. Bioethical debate was silenced by the unfettered drive for conscientious objection that continues to limit women’s autonomy, and fails to ease the public health scourge of massive unsafe clandestine abortions. (shrink)

Concern about the rapid ageing of all societies reaches alarming proportions as healthcare inequities are steeply rising, prompting the elderly to live longer but subject to insufficient social protection and healthcare in the wake of dwindling public resources. The aged population of developing nations are facing additional hardships due to the growing gap between needs and the financial reductions of public institutions, retirement funds, and the trend towards privatization of essential services turned into commodities. Current approaches to allocation of insufficient (...) resources without ageist discrimination are briefly discussed: individual self‐care aimed at successful, active and healthy ageing based on resourcefulness of the privileged elderly; utilitarian approaches founded on QALY and fair innings, and human rights focused on the plights of the elderly. These approaches cannot apply to resources poor nations, who need to engage in context‐bound bioethics dealing with the realities of their exposed ageing population. A developing world bioethics is needed to face the plights of the elderly in countries with low and middle‐income and insufficient social capital. Suggested are: 1) a phenomenological approach based on the interaction of bioethics and ethnology, furthering grass‐roots input from the elderly; 2) Create small communities –campus‐like boroughs– to simplify accessibility to social services and healthcare facilities, as an alternative to the high‐cost WHO proposal of age‐friendly large cities. (shrink)

This chapter contains sections titled: Warming Up Seeking Early Solace Experience and Thought So Be It Against Lukewarmness Pragmatic Use of Belief.

The multidisciplinary provenance of bioethics leads to a variety of discursive styles and ways of reasoning, making the discipline vulnerable to criticism and unwieldy to the setting of solid theoretical foundations. Applied ethics belongs to a group of disciplines that resort to deliberation rather than formal argumentation, therefore employing both factual and value propositions, as well as emotions, intuitions and other non logical elements. Deliberation is thus enriched to the point where ethical discourse becomes substantial rather than purely analytical. Caution (...) must be exercised to avoid this formal permissiveness from accepting empty and incorrigible statements that are but flatus voci since they can neither be supported nor falsified. It is therefore suggested that deliberation in bioethics should comply with three sets of conditions: (1) Be understandable, truthful, honest and pertinent, as suggested by communicative ethics; (2) Allow for second order, thick judgements as suggested by pragmatism; (3) Abide by additional criteria as here proposed: Doxastic propositions should be bolstered by a cognitive element; statements should be specific and proportional to the issue at hand, and they should be arguable and coherent. (shrink)