A selection of web-based materials that might be useful when considering ethics in CBPR.
Guidance on ethics from UK Research Councils
- Economic and Social Research Council (2010) Framework for research ethics, www.esrc.ac.uk/about-esrc/information/research-ethics.aspx
- Medical Research Council, Ethics and Research Guidance, www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/index.htm
- Research Councils UK (2009) Policy and Code of Conduct on the Governance of Good Research Conduct, www.rcuk.ac.uk/Publications/researchers/Pages/grc.aspx
Codes of ethics, guidelines and related documents: Annotated list
Association of Internet Researchers, 'Ethical decision-making and internet research' (2002). http://aoir.org/reports/ethics.pdf
Full guide with related literature and recommendations to inform those making decisions about ethics or undertaking internet research. Useful discussion on legal considerations in relation to web-based research.
Association of Social Anthropologists of the UK and the Commonwealth, 'Ethical Guidelines for Good Research Practice' (1999). www.theasa.org/ethics/Ethical_guidelines.pdf
Thorough advice on undertaking research as a social anthropologist and processes that need to be followed. Whilst the guidelines are from the UK, they apply to doing research outside of the UK as well. This includes a useful section on participants’ intellectual property rights and data protection.
Australian National Health and Medical Research Council, 'Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research' (2003). www.nhmrc.gov.au/_files_nhmrc/publications/attachments/e52.pdf
Discusses ethical relationships in research and explores these through work with the specific ethnic groups of aboriginal and Torres Strait islanders.
British Educational Research Association, 'Ethical Guidelines for Educational Research' (2011). www.bera.ac.uk/system/files/3/BERA-Ethical-Guidelines-2011.pdf
Usefully includes separate sections on ethical responsibilities towards different stake-holders and partners, including participants, the educational community and educational professionals.
British Psychological Society, 'Code of Human Research Ethics' (2010). http://www.bps.org.uk/sites/default/files/documents/code_of_human_research_ethics.pdf
Full set of general principles for all research contexts and all research with human participants. Useful sections on how to do research within the NHS and principles of best practice in ethics reviews.
British Sociological Association, 'Statement of Ethical Practice for the British Sociological Association' (2002). www.britsoc.co.uk/about/equality/statement-of-ethical-practice.aspx
Ethical guidelines and code of practice for all aspects of professional sociology. Includes extensive list of other useful publications and resources; sources of further information, advice and support at the end.
Committee of Publication Ethics, 'How to handle authorship disputes: a guide for new researchers' (2003). www.publicationethics.org/files/2003pdf12.pdf
This discusses key issues in authorship disputes and provides suggestions on how to deal with these. Also explains the key concepts used in authorship, e.g. acknowledgements and order of authors.
Community-Campus Partnerships for Health (2006) Principles of Good Community-Campus Partnerships, http://depts.washington.edu/ccph/principles.html#principles
Nine principles aimed at providing a starting point for discussion or to reflect on the progress of a partnership. There is a link to an article for each principle which details how to put the principle into practice. There are also case studies and the principles are translated into Spanish and Portuguese.
Council for International Organizations of Medical Services (CIOMS), 'International Ethical Guidelines for Epidemiological Studies' (2002). www.ufrgs.br/bioetica/cioms2008.pdf
Contains useful well-structured sections on informed consent, including different categories and how to obtain consent. There are also clear sections on research with different categories of participant, including with groups, vulnerable individuals, children, women and pregnant women.
Council for International Organizations of Medical Services, 'International Ethical Guidelines for Biomedical Research Involving Human Subjects' (2002). http://www.cioms.ch/publications/guidelines/guidelines_nov_2002_blurb.htm
Very extensive guide, containing additional and specific biomedical detail to the CIOMS ‘International Ethical Guidelines for Epidemiological Studies’ above.
Data Protection Act (1998)http://www.legislation.gov.uk/ukpga/1998/29/contents
This is the full Act – part IV includes a section on the legal data protection obligations within research.
Department for Business Innovation and Skills 'Rigour Respect Responsibility: A Universal Ethical Code for Scientists' (2007). http://webarchive.nationalarchives.gov.uk/+/http://www.bis.gov.uk/Policies/science/science-and-society/public-engagement/ethical-code
Short leaflet on key ethical elements of rigour, respect and responsibility when undertaking science research.
Economic and Social Research Council, 'Framework for Research Ethics' (2012). http://www.esrc.ac.uk/about-esrc/information/framework-for-research-ethics/
Provides the key ethical principles and requirements for research undertaken for the ESRC.
ESRC National Centre for Research Methods, 'Visual Ethics: Ethical Issues in Visual Research' (2008). http://eprints.ncrm.ac.uk/421/
This focuses on research using photographs, film and video images. It includes useful illustrated examples and case studies from NCRM research projects and how different ethical issues were dealt with.
European Science Foundation, 'The European Code of Conduct for Research Integrity' (2011). http://www.esf.org/activities/mo-fora/completed-mo-fora/research-integrity.html
Provides key ethical principles for science research and activity and guidelines for good practice. Also includes details of members of the ESF member organisation forum.
International Community of Women Living with HIV/AIDS, 'Guidelines on ethical participatory research with HIV positive women' (2004). www.icw.org/files/EthicalGuidelinesICW-07-04.pdf
Guidelines for ensuring participatory focus of research and ethical practice. This includes a useful checklist of questions to answer to ensure all ethical and participatory elements are covered, along with a worked exercise for introducing ethical guidelines in the appendix.
Involve NHS National Institute for Health Research, 'Public involvement in research: impact on ethical aspects of research'. http://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research/
Briefly but systematically explores the different impacts of having public involvement in the ethical design of a research project. Also includes useful lists of additional references and Involve resources.
Joseph Rowntree Foundation, 'The ethics of survivor research: guidelines for the ethical conduct of research carried out by mental health service users and survivors' (2004). http://www.jrf.org.uk/publications/ethics-survivor-research-guidelines-ethical-conduct-research-carried-out-mental-health-
This manual has been written from the perspective of mental health service users and survivors and looks at key ethical issues within mental health settings. The section on training, support and supervision is particularly useful and includes a list of training resources.
Knowle West Media Centre, ‘A Handbook for Digital Inclusion Through Socially Engaged Practice’ (2011). www.kwmc.org.uk/media/files/002492.pdf
This includes a thorough explanation of key elements of ‘digital inclusion’, with top tips on how to achieve this with useful case study examples.
Medical Research Council, 'Ethics and Research Guidance'. www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/index.htm
Well-structured website with individual sections on different types of medical research, e.g. the use of animals in medical research; and details of the ethical criteria of medical institutions, e.g. the UK Biobank.
Museums Association, 'Code of Ethics for Museums: Ethical principles for all who work for or govern museums in the UK' (2008). www.museumsassociation.org/download?id=15717
Thorough document exploring the role of museums in society and considering unusual and complex ethical issues, including holding items in trust for public use, recognising the interests of those who made or gave the items to the museum and how to look after items into the future.
National Children’s Bureau (NCB) (2011) 'Guidelines for research with children and young people' (Shaw, C., Brady, L-M. and Davey, C.), www.ncb.org.uk/media/434791/guidelines_for_research_with_cyp.pdf
Thorough guide explaining how to involve children and young people in all different parts of the research process, including individual sections from how to involve them as research participants through to their involvement in data analysis and dissemination.
National Disability Authority (2009) 'Ethical guidance for research with people with disabilities', www.nda.ie/cntmgmtnew.nsf/0/232F61AE5397A93D802576650052B3B9/$File/ethicsfootnotes.html
Thorough guide providing advice on undertaking research with people with disabilities. It also includes checklists for, and useful practical examples of, how to engage with participants and the research process.
National Youth Agency, 'Ethical Conduct in Youth Work: a statement of values and principles' (2004). http://nya.org.uk/dynamic_files/workforce/Ethical%20Conduct%20in%20Youth%20Work%20(Reprint%202004).pdf
Discusses the purpose of youth work and importance of ethical practice and explains the ethical principles that youth workers should adhere to when working with young people.
NHS 'National Research Ethics Service'. http://www.nres.nhs.uk/
Well-structured website with individual sections for applicants, staff, patients and the public on the ethical review process for research
NHS Greater Glasgow, 'Ethical Guidelines for Conducting Research with Minority Ethnic Communities' (2004). http://www.phru.net/rande/Shared%20Documents/Research%20Guidelines/Ethical%20Guidelines%20for%20Minority%20Ethnic%20Research.pdf
This usefully provides concise guidance on specific ethical issues that need to be considered when engaging with minority ethnic communities, e.g. cultural sensitivity and language.
Oral History Society, Ethics (2003). www.oralhistory.org.uk/ethics.php
A practical step-by-step guide to addressing ethical issues when undertaking research, which includes an extensive FAQ section.
Participants United, 'Ethics', http://participantsunited.ageofwe.org/ethical-dilemmas/
Participants United was a project funded by the Connected Communities Programme, which brought together researchers and community members from different projects. The website provides details of the overall project and the individual projects involved, along with a section on ethical issues and other information.
Research Councils UK, 'Policy and Code of Conduct on the Governance of Good Research Conduct: Integrity, Clarity and Good Management' (2009). http://www.rcuk.ac.uk/Publications/researchers/Pages/grc.aspx
Includes useful section on how to report and investigate unacceptable research conduct to the research bodies.
Respect, 'Code of Practice for Socio-Economic Research' (2004). www.respectproject.org/code/respect_code.pdf
Short document with concise information about different legal requirements in research, including data protection and intellectual property.
Social Research Association, 'Ethical Guidelines' (2003). www.the-sra.org.uk/wp-content/uploads/ethics03.pdf
Contains extensive section of annotated bibliographies for specific elements of ethics in research, including obligations to: society; funders and employers; colleagues; subjects; and ethics committees.
The Research Ethics Guidebook: a resource for social scientists. www.ethicsguidebook.ac.uk/
This website is aimed at social scientists at any stage of their career. However, it is easy to navigate with concise individual sections for each stage of the research process, with information about the ethical issues that can arise at each stage and advice on how to tackle them.
Timescapes, 'The Ethics of Researching Lives Qualitatively Through Time' (2012). http://www.timescapes.leeds.ac.uk/resources/knowledge-bank-for-ethical-practice-in-qualitative-longitudinal-research
Discussion, drawing on relevant literature, of ethical issues when undertaking research over an extended period of time and how to support participants through the research.
TwoCan Associates, 'User involvement in research: A route map'. http://www.twocanassociates.co.uk/routemap/
This website presents three different routes for user involvement in a well-structured and illustrated way, which is particularly useful for navigating easily between sections and the different parts of the research process.
UK Data Archive: Consent and ethics. www.data-archive.ac.uk/create-manage/consent-ethics
This part of the website has separate sections on different aspects of managing data within research projects, including a thorough section on legal issues.
University of Lancaster, Social Science Research Ethics Website. www.lancs.ac.uk/researchethics/index.html
This website is aimed at social scientists but includes useful sections for anyone undertaking social science research. It has a separate section on participatory research and includes several illustrated project case studies.
World Health Organization, 'Standards and Operational Guidance for Ethics Review of Health-Related Research with Human Participants' (2011). www.who.int/ethics/research/en/
Extensive guidelines for ethics committees, with individual sections for each type of involvement with an ethics committee, including members, secretariat and researchers, e.g. how to develop terms of references.
Yale Center for Clinical Investigations: Community Alliance for Research and Engagement, 'Principles and Guidelines for Community-University Research Partnerships'. http://care.yale.edu/resources/446_96363_EthicalGuidelines-executivesummary_tcm368-55863.pdf
Provides sections on the key roles of both the university and the community when undertaking research in partnership together, including a useful section at the end on training.