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In 2008 the Philosophy Department decided to organise its impact strategy around the research activities of the Essex Autonomy Project (EAP). EAP research has been conducted in two distinct strands with different research outputs and impacts. This case study summarises the impact of our work concerning the legal concept of best interests decision-making. Through EAP public policy roundtables, EAP technical reports, and through work with public organisations and public officials, EAP research has informed professional and public discussion of the law of best interests, has had impact in the development of public policy guidelines for implementing legal requirements, and has played a role in the review and reform of existing regulatory frameworks.
The Human Fertilisation and Embryology Authority (HFEA) regulates a central domain of current biotechnological practice: fertility treatment and embryo research. Appointed as the only philosopher on an Authority of 12 members and as Deputy Chair of the HFEA's Ethics and Law Advisory Committee Archard has provided ethical advice on all new biotechnological developments affecting those tens of thousands of prospective parents seeking fertility treatment. As Chair of its Statutory Approvals Committee he has developed guidelines for the licensing of Pre-Implantation Genetic Diagnosis (PGD) that allows thousands of couples to avoid transmitting serious genetic conditions to their children.
Research undertaken at the University of Manchester (UoM) considers legal guidelines as they relate to the Care of Extremely Premature and/or Sick Neonates and has sought to identify deficiencies in the law, clarify the issues at stake in policy debates and make proposals for constructive responses. Impact has occurred through the utilisation of research in an influential Nuffield Council on Bioethics (NCOB) report. This has led to uptake within guidance provided to health professionals and parents, and ultimately the implementation of report recommendations — most notably the timetable that correlates the decision process on resuscitation to set stages in gestational age, alongside a more holistic approach to best interests — by the British Association of Perinatal Medicine (BAPM) in 2008. The BAPM guidance continues to have a significant impact on clinical practice.
The University of Nottingham's Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care has enhanced the understanding, implementation and uptake of advance care planning for end of life care. Its work has shaped public policy and influenced national initiatives that have improved quality of life and reduced the number of deaths in hospitals. The research has been cited as an exemplar by the World Health Organisation and has helped inform policymaking at European level. It has guided professional practice, educated care staff and contributed to a more positive public attitude towards talking about end of life issues.
Cancer treatment for children is one of the success stories of medical care in the twentieth century. Survival increased from almost zero in the 1950s to today, when treatment for some child cancers results in over 90% survival. These improved survival rates have, however, been achieved through use of highly aggressive treatment protocols, with adverse implications for the child's cognitive, emotional and social development and the burden of care on families. Nationally, researchers at Sheffield were among the first to identify the extent to which children continued to show psychological and behavioural problems, even long after the end of treatment. As such, they contributed significantly to discussions about how to balance medical treatment to control the cancer while taking into account the immediate and longer-term impacts on child quality of life and parents' psychological well-being. The work has had direct implications for both national and international clinical guidelines, and assessment of quality of life in national clinical trials. It has also resulted in user-friendly information for schools and families.
The research has had significant impact in the UK on the development of social and spiritual support for people at the end of life and their families. With Professor Holloway as Social Care Lead on the National End of Life Care Programme (NEoLCP) since 2009, the research has underpinned the launch of a framework for the delivery of social care at the end of life which is now in its second phase of implementation. The framework is endorsed by the Association of Directors of Adult Social Services and has led to local and regional Action Plans and social care practice initiatives. The research on spirituality has led to scoping and training initiatives in healthcare practice and in the funerals industry within the UK and internationally.
Research carried out in the International Observatory on End of Life Care (IOELC) at Lancaster University led by Professor Payne has played a major role in influencing the strategic direction of service and policy development globally. IOELC initiated the systematic collation of development data and delivered the first research-based international analysis of the development of palliative care. For example, research on access to opioids in 12 resource poor countries in central and eastern Europe via the ATOME project has delivered major impact, leading to significant changes in legislation and policy and improved access to pain medication, and palliative and end of life care for millions of people around the world.
A core claim in Emily Jackson's 2001 book and 2002 article was that the process for assessing infertile people's fitness to parent before being allowed to have fertility treatment was unduly invasive and discriminatory.
As a result of this research, the process was changed. In the UK, infertile patients are now presumed to be fit parents, and withholding of fertility treatment on child welfare grounds is only possible if the child would be at risk of serious harm. The link between the research and the policy change is affirmed by Professor Lisa Jardine, chair of the Human Fertilisation and Embryology Authority (HFEA) between 2008 and 2012.
This case study will focus primarily on the ethics of end-of-life care as an illustration of the impact of David Albert Jones' research. Jones has engaged in theological and philosophical research in bioethics at St Mary's University College (SMUC) since 2002. This research has covered a broad range of issues from the status of the human embryo, to organ donation, to the creation of novel human-nonhuman organisms. Jones's research on bioethics from a Catholic perspective has had a significant impact on understanding of these issues within the Catholic Community and on the character and level of public debate. It has also had a demonstrable effect on public policy
Research carried out by Professor Christopher Newdick in the School of Law, University of Reading, explored the ways in which individualistic `rights-based' models of healthcare cause problems within areas of finite public resources, such as NHS treatment rationing and priority-setting. By developing a new ethical model to help settle individual competing rights claims, the research produced impact by changing the policies and practices of a series of NHS Primary Care Trusts (PCTs) who implemented new Ethical Frameworks informed by Newdick's findings. By reframing the treatment rationing debate, and working directly with PCTs, his research produced a new, more robust and defensible way of balancing individual and collective interests within NHS decision-making.