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Confronting complexities

The Irish health system is confronted by a range of challenges, both emerging and recurring. In order to address these, it is essential that spaces are created for conversations around complex ethical and legal issues. This collection aims to provide a basis for ongoing engagement with selected issues in contemporary Irish health contexts. It includes contributions from scholars and practitioners across a range of disciplines, most particularly, ethics, law and medicine.

The focus of the collection is interdisciplinary and the essays are situated at the intersection between ethics, law and medicine. Important issues addressed include admission to care homes; assisted suicide; adolescent decision-making; allocation of finite resources; conscientious objection; data protection; decision-making at the end of life; mental health; the rights of older people; patient responsibilities; stem cell research; the role of carers; and reproductive rights. From these discussion, the collection draws out the following interlinking themes, addressing difference; context and care; oversight and decision-making; and, regulating research.

The essays are theoretically informed and are grounded in the realities of the Irish health system, by drawing on contributors’ contextual knowledge.

This book makes an informed and balanced contribution to academic and broader public discourse.

The Guthrie card example
Deirdre Madden

as a valuable medical resource for diagnosis and research as a result of which the Minister paused the destruction order pending advice from the Attorney General. At the time of writing, approximately 30,000 cards have been returned to those who requested them and the Attorney General’s advice has not been made public. The future of the existing archive therefore remains uncertain. This chapter will consider the ownership of newborn screening cards and DONNELLY 9780719099465 PRINT.indd 135 12/10/2015 15:59 136 Regulating research the blood spots retained on

in Ethical and legal debates in Irish healthcare
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Examining Ireland’s failure to regulate embryonic stem cell research
Ciara Staunton

. Furthermore, DONNELLY 9780719099465 PRINT.indd 151 12/10/2015 15:59 152 Regulating research the greater the moral status that society affords the embryo, the greater the ­justification required before the embryo can be destroyed for ESCR (Holm, 2002). So what could this common morality be? Restrictive approach If the common morality views an embryo as a human being from fertilisation then destroying it for research purposes would contravene the sanctity of life and therefore require a restrictive approach to ESCR. Such an approach is taken by some religions, notably

in Ethical and legal debates in Irish healthcare
Addressing the gaps in the legal framework
Katherine Wade

important for parents and DONNELLY 9780719099465 PRINT.indd 163 12/10/2015 15:59 164 Regulating research those who design, conduct and approve research, to ensure they have a clear understanding of their obligations with respect to children in this context. Clinical trials in Ireland: the current legal framework The main legal instrument in the area of clinical trials in Ireland is the European Communities (Clinical Trials on Medicinal Products for Human Use) Regulations, 2004 (EC Regulations 2004). This implements the Clinical Trials Directive 2001 (Directive 2001

in Ethical and legal debates in Irish healthcare
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Mary Donnelly and Claire Murray

practice backgrounds in ethics, law and medicine. From these conversations, it became clear that the Irish health system is confronted by a range of challenges, both emerging and recurring, and that, because the system is fluid and dynamic, these cannot be DONNELLY 9780719099465 PRINT.indd 2 12/10/2015 15:59 Introduction 3 resolved by simple or one-­dimensional solutions. This understanding informs the chapters in this book. The book has four parts, organised around four interlinking themes: context and care; rights and responsibilities; regulating research; and

in Ethical and legal debates in Irish healthcare
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Regulatory giraffes?
Adam Hedgecoe

trust criteria – a good ‘performance’ from applicants in front of the committee or assumptions about organisational competence, for example – which normally serve RECS well, failed to identify the risks and problems inherent in the research. This does not necessarily mean that trust is an unsuitable way of regulating biomedical research; there are other approaches on offer, of course, but if one wants to regulate research before it takes place , then one has little option but to make trust decisions. To return to the parable offered up by Harold Edgar and David

in Trust in the system
Open Access (free)
Duncan Wilson

Cell Laboratory’, in De Vries et al. (eds), The View from Here, pp. 67–83. 79 Doris T. Zallen, ‘Regulating Research: A Tale of Two Technologies’, Technology and Society, Vol. 11 (1989) pp. 377–86 (p. 377). See also Rose, The Politics of Life Itself. 80 Andrew Abbott, The System of Professions: An Essay on the Division of Expert Labor (Chicago and London: University of Chicago Press, 1988). 81 Harry Collins and Robert Evans, Rethinking Expertise (Chicago and London: University of Chicago Press, 2007) p.  4. Collins and Evans attribute the question ‘Who guards the

in The making of British bioethics
Adam Hedgecoe

the REC and its members . That the literature, replete as it is with researchers’ complaints about the inadequacies of research ethics review, suggests that there is very little trust in RECs (or IRBs, or their jurisdiction-specific equivalent) makes no difference to the requirement that the same researchers, if they wish to remain within the boundaries of regulated research, have to submit to the very same RECs (or IRBs, or their jurisdiction-specific equivalent). Lack of trust in a regulator does not exempt one from having to seek regulatory approval. While in

in Trust in the system

detail in chapter eighteen . The powers of control over scientific research in its EEZ that UNCLOS confers on the coastal State are broadly similar to the powers that a coastal State previously enjoyed under the 1958 CSC to regulate research on its continental shelf, except that here the powers are considerably wider, since they relate not just to the seabed but also to the superjacent water column

in The law of the sea