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      The ethics of unlinked anonymous testing of blood: views from in-depth interviews with key informants in four countries

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          Abstract

          Objectives

          In this study we explore the ethical issues around unlinked anonymous testing (UAT) of blood, a method of seroprevalence surveillance for infectious diseases. Our study focused on UAT for HIV, although UAT can be used for other infectious diseases. The objectives of the research were to gain a better understanding of the views of key informants in countries adopting different UAT testing strategies, and to use the findings of the research to inform health policy.

          Design

          Qualitative study using in-depth interviews and ethical analysis.

          Setting

          Four countries using different strategies around UAT of blood for HIV (the UK, the USA, the Netherlands and Norway).

          Participants

          Twenty-three key informants in the four countries.

          Results

          Participants from the four countries have different views on UAT of blood, and the approaches and policies on UAT adopted by different countries have been historically and culturally determined. We use our findings to explore the relationship between public health policy and ethics, framing our discussion in relation to two important contemporary debates: informed consent for participation in medical and public health research; and the balance between the individual good and the public good.

          Conclusions

          Qualitative research and ethical analysis of UAT of blood in different countries has yielded important findings for consideration by policy makers. The policy of UAT of blood for HIV and other diseases in the UK needs reconsideration in the light of these findings.

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          Most cited references 25

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          Scientific research is a moral duty.

           John Harris (2005)
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            What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations.

             Erica Haimes (2002)
            This article seeks to establish that the social sciences have an important contribution to make to the study of ethics. The discussion is framed around three questions: (i) what theoretical work can the social sciences contribute to the understanding of ethics? (ii) what empirical work can the social sciences contribute to the understanding of ethics? And (iii) how does this theoretical and empirical work combine, to enhance the understanding of ethics, as a field of analysis and debate, is socially constituted and situated? Through these questions the argument goes beyond the now commonly cited objection to the over-simplistic division between normative and descriptive ethics (that assigns the social sciences the 'handmaiden' role of simply providing the 'facts'). In extending this argument, this article seeks to establish, more firmly and in more detail, that: (a) the social sciences have a longstanding theoretical interest analysing the role that a concern with ethics plays in explanations of social change, social organisation and social action; (b) the explanations that are based on the empirical investigations conducted by social scientists exemplify the interplay of epistemological and methodological analyses so that our understanding of particular substantive issues is extended beyond the conventional questions raised by ethicists, and (c) through this combination of theoretical and empirical work, social scientists go beyond the specific ethical questions of particular practices to enquire further into the social processes that lie behind the very designation of certain matters as being 'ethical issues.'
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              • Article: not found

              Responsibility in health care: a liberal egalitarian approach.

              Lifestyle diseases constitute an increasing proportion of health problems and this trend is likely to continue. A better understanding of the responsibility argument is important for the assessment of policies aimed at meeting this challenge. Holding individuals accountable for their choices in the context of health care is, however, controversial. There are powerful arguments both for and against such policies. In this article the main arguments for and the traditional arguments against the use of individual responsibility as a criterion for the distribution of scarce health resources will be briefly outlined. It is argued that one of the most prominent contemporary normative traditions, liberal egalitarianism, presents a way of holding individuals accountable for their choices that avoids most of the problems pointed out by the critics. The aim of the article is to propose a plausible interpretation of liberal egalitarianism with respect to responsibility and health care and assess it against reasonable counter-arguments.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2012
                21 December 2012
                : 2
                : 6
                Affiliations
                [1 ]Department of Social and Environmental Health Research, London School of Hygiene and Tropical Medicine , London, UK
                [2 ]London School of Hygiene and Tropical Medicine , London, UK
                [3 ]Specialist Registrar in Public Health
                Author notes
                [Correspondence to ] Professor Anthony S Kessel; anthony.kessel@ 123456lshtm.ac.uk
                Article
                bmjopen-2012-001427
                10.1136/bmjopen-2012-001427
                3532979
                23263019
                Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions

                This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.

                Product
                Categories
                Public Health
                Research
                1506
                1724
                1693
                1706

                Medicine

                medical ethics, public health

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