Center for Bioethics and Humanities

Patients with blood-related diseases often cannot identify a matched related donor and must seek donors in unrelated donor registries. These registries face the challenge of ensuring that potential donors are available when contacted. Donor attrition is especially problematic when there is only a single perfectly matched potential donor. One way to improve donor availability might be to present perfectly matched donors (high-priority donors [HPDs]) with more precise information about their match status. This project evaluated the impact of providing such information to HPDs at the National Marrow Donor Program (NMDP)/Be The Match. Objectives were to determine the acceptability of the new messaging to both HPDs and the donor contact representatives (DCRs) who delivered the message, consistency of message delivery, and whether the new messaging was associated with improved donor availability. Mixed methods were used to collect telephone interview data from HPDs, matched samples of non-HPDs, and DCRs. Donor availability data came from NMDP records. Key findings were as follows: (1) the HPD message was acceptable to potential donors and did not seem to produce undue pressure, (2) the message was acceptable to DCRs who became more comfortable and consistent in delivering the message over time, but (3) the new messaging did not significantly increase availability. Despite the lack of evidence for increased availability, there may be ethical benefits and little harm to providing well-matched donors with more information about their degree of matching. Research should examine stronger match status messages and delivery of new messaging to additional highly-matched donor groups. Published by Elsevier Inc. on behalf of American Society for Blood and Marrow Transplantation.

Nearly 7% of US citizens born each year have at least one undocumented parent, but many pregnant undocumented immigrants are ineligible for public insurance covering prenatal care due to their immigration status. This article reviews national-level and state-level policies affecting access to prenatal care for members of this population. This article also considers ethical challenges posed by some policies that create obstacles to patients' accessing health care that is universally recommended by professional guidelines. A Call for Prenatal Care Under the Fourteenth Amendment to the US Constitution, babies born in the United States receive American citizenship at birth, regardless of their parents' immigration status. As of 2014, about 7% of citizens born each year, around 275 000 babies, are born to undocumented parents. 1 Despite the size of this segment of the population, however, there exist significant barriers to care for pregnant undocumented immigrants, including several that are directly related to federal policy restricting immigrant access to publicly funded health care. Prenatal care is a vital and necessary health care service that the American College of Obstetricians and Gynecologists (ACOG) recommends for all pregnant people. 2 Despite this recommendation, however, undocumented immigrants are less likely than the US general population to receive adequate levels of prenatal care. 3-5 Undocumented immigrants are also more likely than the US general population to experience complications of labor, 6 and undocumented foreign-born Latinas are more likely than documented foreign-born Latinas to experience low birthweight. 7

If funding allocation is an indicator of a field's priorities, then the priorities of the field of bioethics are misaligned because they perpetuate injustice. Social injustice mandates priority for the factors that drive systematic disadvantage, which tend not to be the areas supported by funding within academic bioethics. Current funding priorities violate social justice by overemphasizing technologies that aim to enhance the human condition without addressing underlying structural inequalities grounded in racism, and by deemphasizing areas of inquiry most frequently pursued by Scholars of Color. This lack of attention to upstream determinants of health in bioethics research perpetuates a gap in the resources needed to understand the experiences of communities disproportionately experiencing poor health, which is itself a form of epistemic injustice. Both social and epistemic injustices are apparent in the impact of these funding priorities on people of color, both in the public and in the bioethics community.

Background: Informed consent requirements generally require a lengthy process and signed documentation for patients to participate in clinical research. With growing interest in comparative effectiveness research (CER), whereby patients receive approved (nonexperimental) medicines for their medical condition, questions have been raised whether the same consent requirements should apply. Little input from patients has been part of these debates. Methods: We conducted two "deliberative engagement sessions" with patients from Johns Hopkins Community Physicians (JHCP) and Geisinger Health System (GHS). Full-day sessions introduced participants to two different CER designs (observational vs. randomized) comparing two antihypertensive medications and three disclosure or consent approaches: Opt-In, Opt-Out, and "General Approval." Sessions consisted of presentations and extensive discussion at small group tables. Pre-and posttest surveys were completed by participants before and after all-day discussions measuring attitudes about research and about each of the three disclosure/ consent options. Results: One hundred thirty-seven adults over age 40 years participated. Attitudes were similar between JHCP and GHS. Participants strongly preferred Opt-In or Opt-Out consent options to General Approval for both observational and randomized designs. For the randomized CER study, 70% liked Opt-In, 65% liked Opt-Out, and 40% liked General Approval. In discussing disclosure/consent options, patients cared most about choice, information, privacy and confidentiality, quality of the research, trust, respect, and impact of the study on patient care. Conclusions: The majority of participants from two different types of health systems liked both Opt-In and Opt-Out approaches for observational and randomized designs for low-risk CER. There were no posttest differences in the proportion liking Opt-In versus Opt-Out. Patients in this study wanted to be told about research and have a choice, but were very open to such disclosures being streamlined. Policymakers may find patients' views about what matters to them in the context of consent and CER relevant.

Nearly 250,000 citizens are born each year to undocumented immigrant parents in the U.S., 1 but undocumented immigrants are ineligible for most public insurance, making it difficult for them to access prenatal care. 2 Because prenatal care is vital for healthy births, 19 states have enacted policies that provide coverage for pregnant undocumented immigrants. 3 Some states, like Nebraska and California, do this by treating the fetus as an unborn citizen who is eligible for Children's Health Insurance Program (CHIP), but this may limit the care that the mother receives. Other states, like New York, provide state funding to cover the mother herself during pregnancy. Most other states, including Maryland, provide no coverage for pregnant undocumented immigrants. No states provide coverage for pre-pregnancy care to this population, and postnatal coverage only lasts two months in states that offer it. 3 Policy limitations on the care that is provided before, during, and after pregnancy can cause health care providers to feel distressed at their inability to live up to their professional norms, like treating all of their patients the same. We interviewed health care providers at eight safety net health centers in California, Nebraska, New York, and Maryland about the experience of providing care to undocumented immigrants under their state policy. Providers were asked about undocumented immigrants accessing care in their health centers, their professional practice norms, and if they felt they could live up to their professional norms when seeing undocumented patients under policy restrictions.

Equitable access to vaccination is crucial to mitigating the disproportionate impact of Covid-19 on low-income communities and people of color in the United States. As primary care clinics for medically underserved patients, Federally Qualified Health Centers (FQHCs) emerged as a success story in the national effort to vaccinate the U.S. public against Covid-19. In February 2021, the Federal Health Center Covid-19 Vaccine Program began allocating vaccine supply directly to FQHCs in an effort to improve vaccine equity. This qualitative study documents how FQHCs in two states successfully mitigated barriers to vaccine access, responded to patient concerns about vaccination, and worked to maintain and grow community trust in a climate of uncertainty and fear during early vaccine roll-out to the general population. Using a socio-ecological model, we show how FQHCs intervened at multiple levels to advance vaccine equity, revealing valuable lessons for health promotion practice in primary...

Citing unresolved issues in two prominent right-to-die court cases, Martin in Michigan and Schiavo in Florida, the thesis of this paper is that the laws should be changed to require that the highest standard of evidence be introduced to prove that guardians of incompetent patients harbor no conflict of interest with regard to these patients. Analogous to the ruling of the U.S. Supreme Court in Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990), that the "clear and convincing" evidence standard must be applied to demonstrate that the incompetent patient would wish to die if comatose or in a persistent vegetative state; so the same "clear and convincing" standard should be applied to show that anyone whose guardianship of a particular patient must be determined by a court would in no way gain from that patient’s death. To have already enacted such a law or established such a precedent would have reduced much of the heartbreaking and unreasonable extension of litigation in the current Schiavo case. The law since the 1976 Quinlan decision has recognized the need to safeguard the right of patients to refuse medical treatment or forced sustenance, but has not been able to ensure that questionably motivated legal guardians will not do away with their incompetent wards, whom they might consider "inconvenient," by exploiting this right within the law. Legislatures or courts could close this loophole to protect incompetent patients from being murdered by surrogate decision makers, while at the same time leaving secure for all patients the right of informed refusal.

The major problem concerning Hegel's four worldhistorical realms is this: How are we to view them-as categories of historical explanation or as philosophical concepts? Does the Oriental Realm really characterize ancient China, ancient India, ancient Persia, and ancient Israel? Does Hegel's representation of the Greek Realm really apply to ancient Greece? Does Hegel's Roman Realm really reflect the Roman Empire? And does the Germanic Realm really typify the reborn Prussia of the post-Napoleonic era? To be sure, their very names-'Oriental', 'Greek', 'Roman', and 'Germanic'-suggest that they are indeed intended to be categories of historical explanation rather than philosophical concepts. But it is quite possible, taking these four realms just at their most superficial level and using the posthumous lectures as our text, to show that Hegel's historical categories simply do not fit the historical facts. It is also possible to show that history has not been as simple in the East as Hegel has chosen to depict it. It is easy, therefore, to conclude that because such an analysis of the four realms would reveal many strictly historical inaccuracies, Hegel's philosophy of history carries neither historical nor philosophical merit. Hegel was no historian-and it is certainly true that his philosophy of history severely lacks historical merit-but it is a most unfair and unjustified leap to say also that his philosophy of history lacks philosophical merit. Of course, to demonstrate that it does have philosophical merit is a difficult task, much more difficult than demonstrating its lack of merit in other respects. Hegel made a mistake in naming his four realms after specific geographical regions, for this nomenclature suggests an affinity with certain peoples and with certain historical periods which is plainly not plausible. The names, however, must have seemed convenient to him, since they effectively connected his illustrations with the ideas he wished to illustrate. The historical China, for example, is only an illustra

What makes books “rare” is problematic and endlessly debatable. But we all know one of the main causes of books becoming “scarce.” People throw them away. In library parlance this process is politely called “weeding,” “deaccessioning,” “discarding,” “deselecting,” “withdrawing,” and the like. But to call a spade a spade, it is no more than dumping the books. They are left on carts in library vestibules to be taken for free or sold in grocery bags for 10¢ each, and thus are dispatched to uncertain fates and probably eventual demise. Only if we are lucky are they traded to other repositories or advertised on listservs as “Free to a Good Home.”

Culture not only justifies the existence of libraries but also determines the level of funding libraries receive for development. Cultural appreciation of the importance of libraries encourages their funding; lack of such appreciation discourages it. Medical library development is driven by culture in general and the culture of physicians in particular. Nineteenth-century North American medical library funding reflected the impact of physician culture in three phases: (1) Before the dawn of anesthesia (1840s) and antisepsis (1860s), when the wisdom of elders contained in books was venerated, libraries were well supported. (2) In the last third of the nineteenth century, as modern medicine grew and as physicians emphasized the practical and the present, rather than books, support for medical libraries declined. (3) By the 1890s, this attitude had changed because physicians had come to realize that, without both old and new medical literature readily available, they could not keep up ...

The transition from self-consciousness as the unhappy consciousness to reason as the critique of idealism is among the most important in Hegel's Phenomenology of Spirit. Yet this transition is implicit and not readily discernible. This paper investigates (1) whether we can discover and describe any roadblock that the unhappy consciousness is able to knock down, or despite which it is able to maneuver, and so become reason; or (2) whether the unhappy consciousness arrives at an impassable dead end and either manages to create a detour around it or just begins again, unexplained and unexplainably, almost ex nihilo, as reason; or (3) whether, despite its implicitness, there exists a continuous, tenable, and unimpeded path from self-consciousness to reason.

Using a data set of 123 countries, the global status of youth is assessed by examining the relationship between national development and a youth-adult ratio, or the number of youth relative to the number of adults in a nation. First, the size of the population of youth in comparison to the size of the adult population is determined, where it becomes evident that the majority of nations have high or very high numbers of youth relative to adults. Second, the opportunities nations provide their young people are evaluated by looking at the range and average levels of economic, political, social, and educational development within the modern worm system. Third, a strong relationship is found between relative size of the youth population and national development, with youth ratios most closely associated with educational and political development. The results of this study demonstrate the existence of inter-age and intra-age stratification throughout the world, which has important implications for the future well-being of youth as well as the worm system of nation-states.