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

      research-article
      1 , 2 , 2 , 3
      BMJ Open
      BMJ Publishing Group
      Public Health, Medical Ethics

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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 references23

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          What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations.

          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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            Collection, storage and use of blood samples for future research: views of Egyptian patients expressed in a cross-sectional survey.

            To determine the attitudes of Egyptian patients regarding their participation in research and with the collection, storage and future use of blood samples for research purposes. Cross-sectional survey. Adult Egyptian patients (n=600) at rural and urban hospitals and clinics. Less than half of the study population (44.3%) felt that informed consent forms should provide research participants the option to have their blood samples stored for future research. Of these participants, 39.9% thought that consent forms should include the option that future research be restricted to the illness being studied. A slight majority (66.2%) would donate their samples for future genetic research. Respondents were more favourable towards having their blood samples exported to other Arab countries (62.0%) compared with countries in Europe (41.8%, p<0.001) and to the USA (37.2%, p<0.001). This study shows that many individuals do not favour the donation of a blood sample for future research. Of those who do approve of such future research, many favour a consent model that includes an option restricting the future research to the illness being studied. Also, many Egyptians were hesitant to have their blood samples donated for genetic research or exported out of the Arab region to the USA and European countries. Further qualitative research should be performed to determine the underlying reasons for many of our results.
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              Why we should not seek individual informed consent for participation in health services research.

              Ethics committees now require that individuals give informed consent to much health services research, in the same way as for clinical research. This is misguided. Existing ethical guidelines do not help us decide how to seek consent in these cases, and have allowed managerial experimentation to remain largely unchecked. Inappropriate requirements for individual consent can institutionalise health inequalities and reduce access to services for vulnerable groups. This undermines the fundamental purpose of the National Health Service (NHS), and ignores our rights and duties as its members, explored here. Alternative forms of community consent should be actively pursued.
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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
                : e001427
                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
                ac5b02b5-e6e5-44cb-a3eb-b3dd8d5095eb
                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.

                History
                : 28 May 2012
                : 8 November 2012
                : 12 November 2012
                Categories
                Public Health
                Research
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                Medicine
                public health,medical ethics
                Medicine
                public health, medical ethics

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