Towards Ethical IL: a thought journey: Keynote Address

In this paper I reflect on the conference topic of Epistemology, opinions, beliefs and realities, and propose that two complementary elements, values and ethics deserve additional close attention, as the conference elements could be seen as contributing aspects of an Information Literacy Ethics Framework. The development of an IL Ethics Framework is an important progression for the IL agenda as scholars and practitioners increasingly deepen and extend that domain. The IL Ethics Framework I propose assumes understandings of information literacy that permeate all aspects of disciplinary, professional, organizational, social and economic pursuits. It assumes information and other professionals developing IL programs in a range of contexts, seeking to activate information empowerment in others as well as in themselves. I present for consideration some possible elements of an IL Ethics Framework, including a) the central principles of being other focused and empowering, b) the actions of creating programs that are grounded in beliefs and c) some suggested personal values that might underpin IL programs and personal activity. Each of these elements is discussed and an invitation extended to consider their development, adaptation or application in particular contexts. To conclude, I highlight some information literacy research and scholarship and professional activity which would seem to resonate with the ethical framework proposed

Direct-to-consumer genetic testing in Slovenia: availability, ethical dilemmas and legislation

Introduction: Over the last few years, many private companies are advertising direct-to-consumer genetic testing (DTC GT), mostly with no or only minor clinical utility and validity of tests and without genetic counselling. International professional community does not approve provision of DTC GT and situation in some EU countries has been analysed already. The aim of our study was to analyse current situation in the field of DTC GT in Slovenia and related legal and ethical issues. Materials and methods: Information was retrieved through internet search, performed independently by two authors, structured according to individual private company and the types of offered genetic testing. Results: Five private companies and three Health Insurance Companies offer DTC GT and it is provided without genetic counselling. Available tests include testing for breast cancer, tests with other health-related information (complex diseases, drug responses) and other tests (nutrigenetic, ancestry, paternity). National legislation is currently being developed and Council of Experts in Medical Genetics has issued an opinion about Genetic Testing and Commercialization of Genetic Tests in Slovenia. Conclusions: Despite the fact that Slovenia has signed the Additional protocol to the convention on human rights and biomedicine, concerning genetic testing for health purposes, DTC GT in Slovenia is present and against all international recommendations. There is lack of or no medical supervision, clinical validity and utility of tests and inappropriate genetic testing of minors is available. There is urgent need for regulation of ethical, legal, and social aspects. National legislation on DTC GT is being prepared

Archival ethics: The truth of the matter

This essay explores the question of whether records professionals are as aware of the ethical dimensions of their work as they should be. It consider first the historical and professional context of archival ethics, then examines a recent case about business archives involving the author that suggests the need for renewed attention to professional ethics, and concludes with a discussion about how archivists might reconsider the ethical dimensions of their work

Social welfare, genetic welfare? Boundary-work in the IVF/PGD clinic

Copyright @ 2006 Elsevier Ltd. All rights reserved.Through the lens of the ‘welfare of the child’ assessment, this paper explores how staff working in the area of in vitro fertilisation and preimplantation genetic diagnosis (IVF/PGD) balance reflexive relations of legitimacy and accountability between the public and private spheres, and between medicine, the citizen and the state. The wider research of which this analysis is a part uses multiple methods to study two National Health Service Assisted Conception Units in England. Research methods used included observation clinics and interviews with staff from a range of disciplines. We illustrate how the staff reveal tensions between their views that the welfare of the child assessment can be seen as intrusive and discriminatory, and on the other hand that medical intervention in reproduction should be socially and professionally accountable. These tensions can be understood sociologically in terms of a gradual movement from socially based solutions to fertility problems and disabilities, towards a biomedical, and arguably genetically oriented world view of such problems. Rather than being viewed as discrete, these two orientations should be seen as indicating an emergent direction of travel along a continuum, with elements of both being present in the accounts. We argue that consideration of the welfare of the child involves staff in ethical boundary-work across the two orientations and between the accountabilities and responsibilities of healthcare professionals, individuals and the state.The Wellcome Trust Biomedical Ethics Programme, who funded the project ‘Facilitating choice, framing choice: the experience of staff working in preimplantation genetic diagnosis’ (no. 074935)

Ethical issues in implementation research: a discussion of the problems in achieving informed consent

Background: Improved quality of care is a policy objective of health care systems around the world. Implementation research is the scientific study of methods to promote the systematic uptake of clinical research findings into routine clinical practice, and hence to reduce inappropriate care. It includes the study of influences on healthcare professionals' behaviour and methods to enable them to use research findings more effectively. Cluster randomized trials represent the optimal design for evaluating the effectiveness of implementation strategies. Various codes of medical ethics, such as the Nuremberg Code and the Declaration of Helsinki inform medical research, but their relevance to cluster randomised trials in implementation research is unclear. This paper discusses the applicability of various ethical codes to obtaining consent in cluster trials in implementation research. Discussion: The appropriate application of biomedical codes to implementation research is not obvious. Discussion of the nature and practice of informed consent in implementation research cluster trials must consider the levels at which consent can be sought, and for what purpose it can be sought. The level at which an intervention is delivered can render the idea of patient level consent meaningless. Careful consideration of the ownership of information, and rights of access to and exploitation of data is required. For health care professionals and organizations, there is a balance between clinical freedom and responsibility to participate in research. Summary: While ethical justification for clinical trials relies heavily on individual consent, for implementation research aspects of distributive justice, economics, and political philosophy underlie the debate. Societies may need to trade off decisions on the choice between individualized consent and valid implementation research. We suggest that social sciences codes could usefully inform the consideration of implementation research by members of Research Ethics Committees

Changing the Architectural Profession - Evidence-Based Design, the New Role of the User and a Process-Based Approach

The construction industry is characterised by ever-changing projects that constantly involve new clients, teams and people. This results in the need to build up new sets of relationships each time. Within these relationships the perspective of the users of space is mostly neglected, partly due to the ephemeral nature of the industry, but partly also because of the character and culture of the architectural profession. In contrast, this paper argues that the architectural profession needs to make a double turn: firstly, the needs and wishes of the user need to be in the centre of the architectural business. Secondly, the whole industry may change from a project-centred one into a process-based one where the process of finding out what the client needs, of engaging the users, proposing a design solution, managing the project, and evaluating its use and appropriation in the end in order to learn from it, is nearly as important as aesthetics, form and function. This involves a lot more intelligence and research about cultures and characteristics of the client, may it be a private person, a city council or a corporation, hence architectural and organisational research may play a new role in the architectural professional culture

Embryo futures and stem cell research: The management of informed uncertainty

This article is available open access and is distributed under a Creative Commons license (http://creativecommons.org/licenses/by/3.0/). Copyright @ 2011 The Authors.In the social worlds of assisted conception and stem cell science, uncertainties proliferate and particular framings of the future may be highly strategic. In this article we explore meanings and articulations of the future using data from our study of ethical and social issues implicated by the donation of embryos to human embryonic stem cell research in three linked assisted conception units and stem cell laboratories in the UK. Framings of the future in this field inform the professional management of uncertainty and we explore some of the tensions this involves in practice. The bifurcation of choices for donating embryos into accepting informed uncertainty or not donating at all was identified through the research process of interviews and ethics discussion groups. Professional staff accounts in this study contained moral orientations that valued ideas such as engendering patient trust by offering full information, the sense of collective ownership of the National Heath Service and publicly funded science and ideas for how donors might be able to give restricted consent as a third option.The Wellcome Trus