A survey of national ethics and bioethics committees

ObjectiveTo assess the current state of national ethics committees and the challenges they face.MethodsWe surveyed national ethics committees between 30 January and 21 February 2018.FindingsIn total, representatives of 87 of 146 national ethics committees (59.6%) participated. The 84 countries covered were in all World Bank income categories and all World Health Organization regions. Many national ethics committees lack resources and face challenges in several domains, like independence, funding or efficacy. Only 40.2% (35/87) of committees expressed no concerns about independence. Almost a quarter (21/87) of committees did not make any ethics recommendations to their governments in 2017, and the median number of reports, opinions or recommendations issued was only two per committee Seventy-two (82.7%) national ethics committees included a philosopher or a bioethicist.ConclusionNational ethics (or bioethics) committees provide recommendations and guidance to governments and the public, thereby ensuring that public policies are informed by ethical concerns. Although the task is seemingly straightforward, implementation reveals numerous difficulties. Particularly in times of great uncertainty, such as during the current coronavirus disease 2019 pandemic, governments would be well advised to base their actions not only on technical considerations but also on the ethical guidance provided by a national ethics committee. We found that, if the advice of national ethics committees is to matter, they must be legally mandated, independent, diverse in membership, transparent and sufficiently funded to be effective and visible.     

A closer look at lay sponsorship. A CHA survey reveals some problems with two established models

The private association of the Christian faithful (PACF) and private juridic person (PJP) are two lay sponsorship options for healthcare organizations that find traditional sponsorship unavailable. Today two questions relate to these models: Are the PACF and the PJP still realistic and attractive models of sponsorship? Can Catholic identity be maintained in them? Last summer CHA surveyed the seven member organizations that use either the PACF or the PJP as sponsorship models. In addition, CHA conducted four site visits, which corroborated the survey findings. Most respondents said their organizations had adopted the lay model as a means of remaining Catholic after their original sponsors withdrew. Most said they had a good relationship with the local diocese, although formal meetings with the diocesan leaders were infrequent. Each organization had a clearly articulated mission and reinforced their mission and values in various ways. Leadership development appeared somewhat weak. Some respondents spoke favorably of the PACF and PJP models of sponsorship, but others saw limitations, including isolation, lack of clarity in reporting mechanisms between the organization and the diocese, and lack of board education about the models. Even those who saw a future for lay sponsorship on the PACF and PJP models said that, although it is important for Catholic healthcare to develop lay leadership, these models are not promising steps in that direction.     

Long-term care survey reveals challenges. Facilities grapple with five broad issues, including changes in leadership and AIDS

The Catholic Health Association's 1992 survey of Catholic long-term care (LTC) facilities identified five broad issues LTC facilities face in the 1990s: leadership, system affiliation, community programs, resident issues, and care of persons with AIDS. The transition to lay leadership presents new challenges to the relationship between LTC facilities and their sponsors. Despite the dominance of religious sponsors, an increasing number of laypersons are serving as healthcare administrators both in long-term and acute care. Thirty percent of respondents reported being affiliated with a multi-institutional system. This percentage has changed little in the past few years, although the number of facilities that are system members continues to increase at the fastest rate of any type of LTC facility. Only 27 percent of survey respondents said they provide educational or informational programs for persons in their communities. Thirty-nine percent of system-affiliated LTC facilities reported offering such programs. One encouraging finding shows that 80 percent of facilities have written policies for living wills, 64 percent for designated proxy, and 86 percent for durable power of attorney for healthcare. LTC providers are struggling to determine their role in caring for persons with HIV and AIDS. Only 3.6 percent of respondents care for residents with AIDS. A major problem LTC administrators face is a fear of potential infection of staff or residents.     

Counting community benefits. CHA survey reveals members' commitment to providing care for the poor and other community services. Catholic Health Association

In its 1990 National Community Benefits Survey, the Catholic Health Association (CHA) found that in recent years Catholic hospitals increased the amount of uncompensated care they provided, despite growing fiscal constraints. CHA also found that, in the two years since it introduced the Social Accountability Budget, 60 percent of Catholic healthcare facilities have used either CHA's process or a similar structured approach to reinforce, measure, and plan their contributions to the community. Of the hospitals that responded to the survey, 91 percent provided nonbilled services targeted to low-income populations in 1989, more than 75 percent provided free or discounted services to other populations with special needs, and about 82 percent made free or discounted services available to the broader community. In addition, the majority of Catholic facilities can now more accurately report the dollar value of the uncompensated care they provide. In Illinois 31 of the state's 52 Catholic hospitals were able to quantify the value of the benefits they provide to the poor and the broader community. Moreover, facilities and systems throughout the nation are intensifying their efforts to plan and coordinate programs to meet community needs and the needs of the poor.     

Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues

Background: When conducting research with American Indian tribes, informed consent beyond conventional institutional review board (IRB) review is needed because of the potential for adverse consequences at a community or governmental level that are unrecognized by academic researchers.Objectives: In this article, we review sovereignty, research ethics, and data-sharing considerations when doing community-based participatory health–related or natural-resource–related research with American Indian nations and present a model material and data-sharing agreement that meets tribal and university requirements.Discussion: Only tribal nations themselves can identify potential adverse outcomes, and they can do this only if they understand the assumptions and methods of the proposed research. Tribes must be truly equal partners in study design, data collection, interpretation, and publication. Advances in protection of intellectual property rights (IPR) are also applicable to IRB reviews, as are principles of sovereignty and indigenous rights, all of which affect data ownership and control.Conclusions: Academic researchers engaged in tribal projects should become familiar with all three areas: sovereignty, ethics and informed consent, and IPR. We recommend developing an agreement with tribal partners that reflects both health-related IRB and natural-resource–related IPR considerations.     

A new approach to hospital cost functions and some issues in revenue regulation.

An important aspect of hospital revenue regulation at the State level is the use of retroactive allowances for changes in the volume of service. Arguments favoring non-proportional allowances have been based on statistical studies of marginal cost, together with concerns about fairness toward non-profit enterprises or concerns about various inflationary biases in hospital management. This article attempts to review and clarify the regulatory issues and choices, with the aid of new econometric work that explicitly allows for the effects of transitory as well as expected demand changes on hospital expense. The present analysis is also novel in treating length of stay as an endogenous variable in cost functions. We analyzed cost variation for a panel of over 800 hospitals that reported monthly to Hospital Administrative Services between 1973 and 1978. The central results are that marginal cost of unexpected admissions is about half of average cost, while marginal cost of forecasted admissions is about equal to average cost. We obtained relatively low estimates of the cost of an "empty bed." The study tends to support proportional volume allowances in revenue regulation programs, with perhaps a residual role for selective case review.