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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 (NIH) 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 timely topic.

Today, certain rule-violating behaviours, such as doping, are considered to be an issue of concern for the sport community. This paper underlines and examines the affective dimensions involved in m ...

In this paper we will argue: (1) that scholars, regardless of their normative stand against or for genetic enhancement indeed have a moral/professional obligation to hold on to a realistic and up-to-date conception of genetic enhancement; (2) that there is an unwarranted hype surrounding the issue of genetic enhancement in general, and gene doping in particular; and (3) that this hype is, at least partly, created due to a simplistic and reductionist conception of genetics often adopted by bioethicists.

In this review we investigate how assessments of quality of life (QoL) can be used in daily clinical practice. The focus is on individualized QoL assessments, but computerized-adaptive testing and interpretation of QoL scores are also considered. Quality of life (QoL) measurements have been used relatively infrequently in clinical practice, although individualized care planning and follow-up based on QoL information may lead to better outcomes of treatment and informed and autonomous decision-making by patients. A recent approach in assessing QoL is by individualized measures, which tap QoL as defined by the individual patient. Individualized QoL instruments, such as the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) and the Patient-Generated Index (PGI), have obvious appeal for use in clinical practice, since they incorporate topics of greatest concern to the individual patient, while also capturing their ratings and weightings. However, before general use in daily clinical practice can be recommended, some aspects of these instruments require further research, particularly issues concerning reliability, feasibility, interpretation and effectiveness.

Graham CE, Molster C, Baynam GS, et al. Journal of Biorepository Science for Applied Medicine. 2014;2:49–61.Author Deborah Mascalzoni from the Centre for Research Ethics and Bioethics, Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden, was erroneously left off the author list, please see the correct list here.Caroline E GrahamCaron MolsterGareth S BaynamKate BushbyMats HanssonDeborah MascalzoniAnna KoleMarina MoraLucia MonacoMatthew BellgardDavid CarpentieriManuel PosadaOlaf RiessYaffa R RubinsteinFranz SchaeferDomenica TaruscioSharon F TerryKurt ZatloukalBartha KnoppersHanns LochmüllerHugh JS Dawkins Read the original article