The general consensus among sport and exercise genetics researchers is that genetic tests have no role to play in talent identification or the individualised prescription of training to maximise performance. Despite the lack of evidence, recent years have witnessed the rise of an emerging market of direct-to-consumer marketing (DTC) tests that claim to be able to identify children's athletic talents. Targeted consumers include mainly coaches and parents. There is concern among the scientific community that the current level of knowledge is being misrepresented for commercial purposes. There remains a lack of universally accepted guidelines and legislation for DTC testing in relation to all forms of genetic testing and not just for talent identification. There is concern over the lack of clarity of information over which specific genes or variants are being tested and the almost universal lack of appropriate genetic counselling for the interpretation of the genetic data to consumers. Furthermore independent studies have identified issues relating to quality control by DTC laboratories with different results being reported from samples from the same individual. Consequently, in the current state of knowledge, no child or young athlete should be exposed to DTC genetic testing to define or alter training or for talent identification aimed at selecting gifted children or adolescents. Large scale collaborative projects, may help to develop a stronger scientific foundation on these issues in the future.

Evidence-based severity assessment in laboratory animals is, apart from the ethical responsibility, imperative to generate reproducible, standardized and valid data. However, the path towards a valid study design determining the degree of pain, distress and suffering experienced by the animal is lined with pitfalls and obstacles as we will elucidate in this review. Furthermore, we will ponder on the genesis of a holistic concept relying on multifactorial composite scales. These have to combine robust and reliable parameters to measure the multidimensional aspects that define the severity of animal experiments, generating a basis for the substantiation of the refinement principle.

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.

We need an international infrastructure for the ethical, legal and social implications of genomic research.

PurposeSurvival after liver transplantation (LTX) has decreased in Germany since the implementation of Model for end-stage liver disease (MELD)-based liver allocation. Primary sclerosing cholangitis (PSC) is known for its otherwise excellent outcome after LTX. The influence of MELD-based liver allocation and subsequent allocation policy alterations on the outcome of LTX for PSC is analyzed.MethodsThis is a retrospective observational study including 126 consecutive patients treated with LTX for PSC between January 1, 1999 and August 31, 2012. The PSC cohort was further compared to all other indications for LTX in the study period (n = 1420) with a mean follow-up of 7.9 years (SD 3.2). Multivariate risk-adjusted analyses were performed. Alterations of allocation policy have been taken into account systematically.ResultsTransplant recipients suffering from PSC are significantly younger (p < 0.001), can be discharged earlier (p = 0.018), and have lower 3-month mortality than patients with other indications (p = 0.044). The observed time on the waiting list is significantly longer for patients with PSC (p < 0.001), and there is a trend toward lower match MELD points in the PSC cohort (p = 0.052). No improvement in means of short-term mortality could be shown in relation to alterations of allocation policy within the MELD era (p = 0.375). Survival rates of the pre-MELD era did not differ significantly from those of the MELD era (p = 0.097) in multivariate risk-adjusted analysis. Patients in the MELD era suffered pre-transplant significantly more frequently from dominant bile duct stenosis (p = 0.071, p = 0.059, p = 0.048, respectively; chi2).ConclusionsProgress is stagnating in LTX for PSC. Current liver allocation for PSC patients should be reconsidered.