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Researchers and policymakers do not agree about the most appropriate way to get consent for the use of donations to a biobank. The most commonly used method is blanket-or broad-consent where donors allow their donation to be used for any future research approved by the biobank. This approach does not account for the fact that some donors may have moral concerns about the uses of their biospecimens. This problem can be avoided using \"real-time\"-or study-by-study-consent, but this policy places a significant burden on biobanks. In order to better understand the public's preferences regarding biobank consent policy, we surveyed a sample that was representative of the population of the United States. Respondents were presented with 5 biobank consent policies and were asked to indicate which policies were acceptable/unacceptable and to identify the best/worst policies. They were also given 7 research scenarios that could create moral concern (e.g. research intending to make abortions safer and more effective) and asked how likely they would be to provide broad consent knowing that their donation might be used in that research. Substantial minorities found both broad and study-by-study consent to be unacceptable and identified those two options as the worst policies. Furthermore, while the type of moral concern (e.g., regarding abortion, the commercial use of donations, or stem cell research) had no effect on policy preferences, an increase in the number of research scenarios generating moral concerns was related to an increased likelihood of finding broad consent to be the worst policy. The rejection of these ethically problematic and costly extremes is good news for biobanks. The challenge now is to design a policy that combines consent with access to information in a way that assures potential donors that their interests and moral concerns are being respected.

The research importance of biobanked biological materials and their derived data is growing, especially as these are increasingly linked with individual and population‐level medical and health information. The number, diversity, and size of biobanks are growing in tandem. So, too, is the number of individuals whose donations are being used in biobank‐supported research, with or without their knowledge. Pretty soon, we all will be “participants” in a variety of research projects we know nothing about. Until recently, our leftover tissue or deidentified medical information could be used for research without our consent or even our knowledge. Even if we've been asked–as the current regulations require when research uses are anticipated‐we were most likely asked to give a blanket consent to any future use, with no prospect of learning about or controlling how our material is later used. This is an ethically problematic state of affairs, but there are options for improving it.

Does a patient with advanced incurable disease have a right not to hear the bad news? We think not. Failing to disclose a poor prognosis undermines patient autonomy and increases the likelihood of poor end-of-life care.

Like many other bioethicists, I often give talks on clinical topics that may touch on the patient's right of autonomy with regard to medical treatment and, from there, may move to questions about whether said patient has the capacity to exercise said right. When I get to that subject, I might ask, \"Is this person competent to refuse treatment?\" A stunned silence falls over the room, until finally a hand shoots up. \"'Competent' is a legal term,\" I am instructed. \"Don't you mean to ask whether he has the capacity to make decisions for himself?\" The tone suggests that I'm being helped to make a very important distinction. But it's not a very important distinction; and it's misleading to boot.

Like many other bioethicists, I often give talks on clinical topics that may touch on the patient's right of autonomy with regard to medical treatment and, from there, may move to questions about whether said patient has the capacity to exercise said right. When I get to that subject, I might ask, “Is this person competent to refuse treatment?” A stunned silence falls over the room, until finally a hand shoots up. “‘Competent’ is a legal term,” I am instructed. “Don't you mean to ask whether he has the capacity to make decisions for himself?” The tone suggests that I'm being helped to make a very important distinction. But it's not a very important distinction; and it's misleading to boot.

The capacity to designate a surrogate (CDS) is not simply another kind of medical decision-making capacity (DMC). A patient with DMC can express a preference, understand information relevant to that choice, appreciate the significance of that information for their clinical condition, and reason about their choice in light of their goals and values. In contrast, a patient can possess the CDS even if they cannot appreciate their condition or reason about the relative risks and benefits of their options. Patients who lack DMC for many or most kinds of medical choices may nonetheless possess the CDS, particularly since the complex means-ends reasoning required by DMC is one of the first capacities to be lost in progressive cognitive diseases (eg, Alzheimer’s disease). That is, patients with significant cognitive decline or mental illness may still understand what a surrogate does, express a preference about a potential surrogate, and be able to provide some kind of justification for that selection. Moreover, there are many legitimate and relevant rationales for surrogate selection that are inconsistent with the reasoning criterion of DMC. Unfortunately, many patients are prevented from designating a surrogate if they are judged to lack DMC. When such patients possess the CDS, this practice is ethically wrong, legally dubious and imposes avoidable burdens on healthcare institutions.