I am attempting to gather experiences of researchers who conduct community based participatory research, with particular focus on ethical challenges in the course of their research.
I would like to suggest my latest book on ethics entitled "Ethics in Tissue Establishments"; World Scientific; ISBN 978-9814616751; 2014.
The book has seven chapters. Chapter I gives to the lectures an overall view on the current use of human tissue in certain medical treatment and in scientific medical research and on how this use has been increased in a variety of ways in the past years. These include human tissue transplantation, the utilisation of human tissue for research on new medicines, and the role of human cell lines and genetic material for studying fundamental biological processes. Nevertheless, it is important to emphasise that the use of human tissue raises ethical issues of great concern to health care professionals, biomedical researchers, ethics committees, tissue establishments and policy makers within national health care authorities. At the same time, society demands general respect for the human body and its parts and, for this reason, human tissue should not be used at will or abused. Practices that have been questioned include the commercial exploitation of products derived from the tissue of patients or research subjects.
Chapter II highlight the importance of ethics in the field of human tissue banking. The use of human tissues in certain medical practices has been consecrated as an effective modality to save lives and to improve the quality of life of thousands of individuals after passing specific medical treatment. Doctors and dentists use human tissue for a variety of medical purposes. Donated skin can meet critical needs in healing burns victims and in reconstructive surgery. Donated bone can be implanted to replace the cancerous bone; it can be used in knee and hip replacements and in spinal surgery; and it can be processed into a powder for use in dental surgery. Donated heart valves can replace defective valves in young children saving their lives.
The success rates for transplantation of human tissues have ensured that processed tissues can be used more frequently in specific medical treatment without increasing the risk of the recipient. To avoid the improper uses of the tissues procured by a tissue establishment is necessary to promote and adopt certain ethical principles to be observed by tissue establishment operators and medical staff during the procurement, processing, storage, distribution and use of human tissues. The purpose of observing ethical principles is to avoid not only the abuse and unethical practices in tissue banking, but the violation of specific regulations in force in the country. The chapter includes several ethical principles that should be observed by the tissue establishments.
Chapter III includes a model of a code of ethics. This model can be used as reference by interested tissue establishments during the modification of their current standards or that has decided to prepare a new code that takes into account new development in the ethical field.
Chapter IV highlights the importance of a code of practice for a tissue establishment. While there are inescapable acts of individual judgement involved in ethical decisions, nevertheless, it is desirable that conclusions should be reached in ways that result in as consistent a practice as possible. A way of achieving this in a given area of activity is to formulate a code of practice, providing general guidelines within which individual decisions are to be made. A code of practice are defined as “written guidelines issued by an official body or a professional association to its members to help them comply with its ethical standards and should specify the requirements for the activities of tissue establishments for the procurement and processing of human tissues for therapeutic use and research activities”. The scope of a code of practice should include all human tissues used for therapeutic purposes, including those used in clinical trials and research activities. The objective of a code of practice is to provide a set of principles and procedures that, when followed by tissue establishments, helps to ensure that the tissue processed will have the required quality.
Chapter V includes a model of a code of practice. This model can be used as reference by interested tissue establishments during the modification of their current standards or that has decided to prepare a new code that takes into account new development in this important field.
Chapter VI highlights the possible role of governments, the World Health Organisation, the International Atomic Energy Agency and regional professional associations in the promotion of ethics and best practice in tissue banking. A set of proposals and recommendations to be followed by interested governments, the World Health Organisation, the International Atomic Energy Agency and regional professional associations has been included.
Chapter VII includes a summary of the main topic addresses in previous chapters.
Sorry I haven't seen your question until now but if you are still looking.... I was wondering if you had come across Durham University's Centre for Social Justice and Community Action? They are part of the National Co-ordinating Centre for Public Engagement in the UK and they have produced a range of materials focussing on ethics in participatory research including case study examples and a report.
My colleague and I have recently written an article (under review) about CBPR in counselling and psychotherapy research - the main areas of ethical challenges we identified in this particular field relate to data management and confidentiality, potential distress to co-researchers (including academic co-researchers) and participants - especially if they are current counselling clients. The nature of ethical issues in CBPR will be different for every project depending on the topic and the arrangement - for example, are participants also co-researchers or are co-researchers and participants separate? Are co-researchers part of the same community as participants?
Thanks so much for your reflections. My research blog is still open. Would you be interested in contributing these reflections to that blog - a cut and past job would be fine if you are happy to do this? The blog is at www.cbprethics.wordpress.com
You raise an interesting question about the distinctions between the co-researchers and the community ..... I wonder then if the researcher is the other part of that co in the co-researching equation and how could that be accommodated?
I am very interested to read your article when it is published. Thanks again.