This document collects together a number of reflections on the statutory time limit for maintaining human embryos in culture. This issue was raised for consideration at the Nuffield Council's annual 'forward look' meeting in February 2016. It was given an additional impetus the following month by the publication of research that suggested, for the first time, the possibility that embryos could be cultured for longer than 14 days (the current statutory limit in the UK). This led the Council to hold a workshop with the range of experts to discuss whether, after 25 years, there may be persuasive reasons to review this legal limit or whether the reasons for its introduction remain sound. * Professor Montgomery is Professor of Health Care Law, University College London and was Chair of the Nuffield Council on Bioethics (2012-17). A second set of arguments that were outside the scope of this piece of work but that would be relevant to a full reconsideration concern the relationship of the 14-day question to other social currents. We have already noted concerns about 'slippery slope' arguments that are held in some quarters. It is likely that any discussion of the embryo research rules would be affected by public confidence in the integrity of scientists. The experience of recent Parliamentary interventions, such as the developments in the regulation of mitochondrial replacement therapies, would also be 6 Legislation.gov.uk
Is an ethical and effective way of dealing with organ donation shortages
This paper will examine the recent Human Fertilisation and Embryology Authority public consultation on sex selection. It will review the current regulation on sex selection in the United Kingdom and critically examine the outcomes of the HFEA consultation. The paper will argue that the current ban on embryo sex selection for social reasons and a proposed ban on sperm selection are not justified. There is no evidence for sex selection causing an increase in sex discrimination; creating a slippery slope towards selection for other non-disease characteristics; or promoting a consunmerist attitude towards children. The HFEA recommendations to prohibit social sex selection techniques rely upon an unwarranted concern about the risk of the procedures used. Reproductive technologies should be made available to peoptle unless a substantial risk of harm--to the child, the parents or to society--can be identified. There is no such evidence of harm in this case.
ObjectiveTo generate stakeholder informed evidence to support recommendations for trialists to implement the dissemination of results summaries to participants.DesignA multiphase mixed-methods triangulation design involving Q-methodology, content analysis, focus groups and a coproduction workshop (the REporting Clinical trial results Appropriately to Participants project).SettingPhase III effectiveness trials.ParticipantsA range of participants were included from ongoing and recently completed trials, public contributors, trialists, sponsors, research funders, regulators, ethics committee members.ResultsFewer than half of the existing trial result summaries contained information on the clinical implications of the study results, an item deemed to be of high importance to participants in the Q-methodology study. Priority of inclusion of a thank you message varied depending on whether considering results for individuals or populations. The need for personally responsive modes of sharing trial result summaries was highlighted as important. Ideally, participants should be the first to know of the results with regard to the timing of sharing results summaries but given this can be challenging it is therefore important to manage expectations. In addition to patients, it was identified that it is important to engage with a range of stakeholders when developing trial results summaries.ConclusionsResults summaries for trial participants should cover four core questions: (1) What question the trial set out to answer?; (2) What did the trial find?; (3) What effect have the trial results had and how will they change National Health Service/treatment?; and (4) How can I find out more? Trial teams should develop appropriately resourced plans and consult patient partners and trial participants on how ‘best’ to share key messages with regard to content, mode, and timing. The study findings provide trial teams with clear guidance on the core considerations of the ‘what, how, when and who’ with regard to sharing results summaries.
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