Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...) range of consent strategies, and gaps in our understanding, and concluded with a proposal for broad initial consent coupled with oversight and, when feasible, ongoing provision of information to donors. This article describes areas of agreement and areas that need more research and dialogue. Given recent proposed changes to the Common Rule, and new guidance regarding storing and sharing data and samples, this is an important and tim.. (shrink)

This chapter examines whether an individual’s being worse off than others should be a relevant consideration in the allocation of limited medical resources. It reviews arguments pressed by proponents of different theories of justice about whether being worse off than others makes special demands on health care resource prioritization. Even if there is good reason to restrict the concern for the worse off to those with worse health in the prioritization and allocation of health care resources, additional issues remain. One (...) is how to determine who has worse health, and whether the worse off are those with the worse overall health or those with the most serious medical condition now in need of treatment. Another issue is whether only individuals’ present health, or instead their lifetime health, including past and expected future health, is relevant. (shrink)

Rationing is the allocation of a good under conditions of scarcity, which necessarily implies that some who want and could be benefitted by that good will not receive it. One reflection of our ambivalence towards health care rationing is reflected in our resistance to having it distributed in a market like most other goods—most Americans reject ability to pay as the basis for distributing health care. They do not view health care as just another commodity to be distributed by markets. (...) Despite this widespread view, we are the only developed country without some form of universal health insurance, and so for the 46 million Americans without health insurance their access to health care often does depend on their ability to pay for it. Rationing largely remains a topic that the public, their elected leaders, and many health care professionals prefer to avoid. Ever-growing costs of health care will increasingly force the practice and issue of health care resource prioritization and rationing into the open for public, professional, and political attention. This paper explores some of the features of those practices and issues that make them especially ethically and politically difficult. Those issues will not be easily resolved, but avoiding them will not avoid the need or reality of rationing, it will only mean that it will go on covertly and unexamined. That will lead neither to better or more legitimate prioritization and rationing decisions. (shrink)

The prelims comprise: References Additional Reading.

"Be All You Can Be," the Army recruiting poster urges young men and women. Many parents share the sentiment. They want their children to be the best they can be. For many parents, their most important project in life is to pursue that goal, and they make sacrifices to see it happen. And why shouldn't parents aim to make their offspring the best they can be?