This title was first published in 2000: This third volume of proceedings of the European Network for Biomedical Ethics focuses on the ethical issues surrounding the debates on reproductive medicine and genetics in human procreation. Central issues include procreation and parenthood, moral protection of the human embryo and foetus, autonomy and recognition, social implications, moral reasoning in applied ethics, legal regulations of assisted procreation, genetic diagnosis and gene therapy. The legal regulation paper evaluates the central laws and guidelines of European countries.

This chapter discusses the Research Ethics Committee (REC) system in the UK, with special reference to the responsibilities that RECs have to attend to legal requirements generally, and data protection laws in particular, when they review research proposals. RECs have operated in the UK National Health Service (NHS) since the mid-1960s. Until 2004 there were two kinds of NHS RECs—local research ethics committees (LRECs) and multicentre research ethics committees (MRECs). The UK Courts have historically proven reluctant to hold public authorities liable in negligence for their actions, although current case law shows that this is beginning to change. In addition, the Department of Health published its Research Governance Framework for Health and Social Care (RGF) in 2001. The latter document also gives guidance to RECs, and there are similar framework documents for Scottish, Welsh and Northern Irish RECs.

These questions were given to the PRIVIREAL Members in February 2002 in order to guide the first part of the project. Hereafter can be found the questions asked to the EU countries, Norway and the (at that time) NAS countries. Some of the questions were adapted to the NAS countries and are specially mentioned. The domestic reports published in the companion volume 1 to this book from the PRIVIREAL series often use these questions as a framework for their reports.

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The full-text may be used and/or reproduced, and given to third parties in any format or medium, without prior permission or charge, for personal research or study, educational, or not-for-pro t purposes provided that: • a full bibliographic reference is made to the original source • a link is made to the metadata record in DRO • the full-text is not changed in any way The full-text must not be sold in any format or medium without the formal permission of the copyright holders. Please consult the full DRO policy for further details.

Abstract The two legislative instruments of the European Community (EC) with the greatest impact on medical research are Directive 95=46=EC, the “Data Protection Directive,” and Directive 2001=20=EC on good clinical practice in clinical trials, the “Clinical Trials Directive” Although Directive 95=46=EC had to be implemented by October 1998, there has as yet been no case law at the EC level on its requirements in relation to medical research. The deadline for implementation of Directive 2001=20=EC was May 2004, and, again, no case law about it has yet emerged. This renders it difficult to make definitive legal statements about many aspects of these directives. Consequently, our analysis is to a degree speculative and tentative, and some of the statements we make might be controversial.

The philosophical concept of the self has had a hard time for a long time. The scepticism that lay behind Hume’s ‘bundle’ theory has been made manifest in ‘post-philosophical’ claims that the self or subject is not so much (not even) a ‘something’ that ties together a bundle of sense impressions, but is rather to be seen as an effect of a system of power relations, or an illusory presupposition of the relational properties of syntax

Outlines the scope of Council Directive 95/46. Discusses whether the principles of data protection apply to data rendered anonymous. Examines the difficulty in applying sufficient protection to data once it has been rendered anonymous and stresses the importance of data controllers informing data subjects of any anticipated anonymisation.

Abstract What is meant by ‘ethics’ is discussed and linked to ‘morality’, after which there is a brief overview of normative moral theories and comments are made about whether it is possible to choose rationally between moral theories. Regardless of this, there is considerable consensus in Western societies on principles (which is codified in various human rights conventions and the World Medical Federation Declaration of Helsinki ). However, at the level of substance (which concerns which activities are right, wrong, or permissible), this consensus may be more apparent than real, and it is suggested that effective consensus only exists at a procedural level concerning principles governing how to resolve conflicts about issues of substance. With this as background, the use of statistics when citing DNA analysis as forensic evidence; and the use of heritability studies to make claims about the extent to which genetic factors are implicated in various conditions are discussed. In relation to both uses, it is argued that lack of understanding of statistics in general and of statistics in human genetics in particular has been exploited in ways that are unethical in terms of the existing procedural consensus, and that this exploitation also provides good reason for the public to mistrust scientists.

In this article we argue that the House of Lords recently erred severely by failing to apply the Human Rights Act 1998 retrospectively, and that the appropriate remedy is to deploy the 1966 ‘Practice Statement’. We describe how the House has made a number of basic mistakes in interpreting the literal meaning of the Act. These errors are partly explained by the court's reliance upon a general presumption that law should not be applied retrospectively. We argue that human rights legislation is a necessary exception to this rule. We maintain this for philosophical reasons, but also contend that s 3(1) of the Human Rights Act reverses the presumption against retrospectivity and requires a new presumption that human rights should be given effect whenever it is possible to do so. This is a vital issue because s 3(1) is one of the most important provisions in the UK constitution.

This paper examines the view of the operational management of the UK Research Ethics Committee (REC) system that RECs may not reject applications on purely legal grounds. Two arguments are offered for this view: the first rests on the contention that being lawful and being ethical are not the same thing; the second is that RECs lack expertise and authority to base their decisions on legal considerations. However, whatever the philosophical standing of the first argument, it is contrary to published guidance, the basis of RECs' official authority, unethical, and politically imprudent to permit RECs not to consider conformity with the law to be at least a necessary condition for REC approval. In any event, RECs can obtain competent and authoritative advice on the law (though the Department of Health has been remiss in this regard), and they do not exceed their authority by applying the law, because this is within their ethical remit. When current guidance to RECs about advising researchers on whether or not breaches of confidence are permissible in the public interest is linked to the view of the REC management that the role of RECs is to facilitate research (albeit ethical research), this raises serious doubts about the integrity of the system of ethical review currently in place, which is illustrated by a recent "agreement" of the Chairmen of the MRECs not to consider the Data Protection Act 1998 in their ethical review.

Ratio JurisVolume 15, Issue 4 p. 458-473 A Reply to Marcus G. Singer on Gewirth, Beyleveld and Dialectical Necessity Deryck Beyleveld, Deryck Beyleveld University of Sheffield, UKSearch for more papers by this author Deryck Beyleveld, Deryck Beyleveld University of Sheffield, UKSearch for more papers by this author First published: 13 February 2003 https://doi.org/10.1111/1467-9337.00219AboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onEmailFacebookTwitterLinkedInRedditWechat Volume15, Issue4December 2002Pages 458-473 RelatedInformation

# 1. WHAT DO THE PUBLIC THINK ABOUT THE USE OF THEIR HEALTH INFORMATION? PATIENT ELECTRONIC RECORD: INFORMATION AND CONSENT—THE PERIC PROJECT {#article-title-2} 3921 adults randomly selected from across Great Britain were interviewed. Subjects were asked to assess a selection of 10 out of 200