BackgroundImplementation science research, especially when using participatory and co-design approaches, raises unique challenges for research ethics committees. Such challenges may be poorly addressed by approval and governance mechanisms that were developed for more traditional research approaches such as randomised controlled trials.DiscussionImplementation science commonly involves the partnership of researchers and stakeholders, attempting to understand and encourage uptake of completed or piloted research. A co-creation approach involves collaboration between researchers and end users from the onset, in question framing, research design and delivery, (...) and influencing strategy, with implementation and broader dissemination strategies part of its design from gestation. A defining feature of co-creation is its emergent and adaptive nature, making detailed pre-specification of interventions and outcome measures impossible. This methodology sits oddly with ethics committee protocols that require precise pre-definition of interventions, mode of delivery, outcome measurements, and the role of study participants. But the strict requirements of ethics committees were developed for a purpose – to protect participants from harm and help ensure the rigour and transparency of studies. We propose some guiding principles to help square this circle. First, ethics committees should acknowledge and celebrate the diversity of research approaches, both formally and informally ; without active support, their members may not understand or value participatory designs. Second, ground rules should be established for co-design applications and communicated to committee members and stakeholders. Third, the benefits of power-sharing should be recognised and credit given to measures likely to support this important goal, especially in research with vulnerable communities. Co-design is considered best practice, for example, in research involving indigenous peoples in New Zealand, Australia and Canada. (shrink)

Power is an inescapable aspect of all socialrelationships, and inherently is neither goodnor evil. Doctors need power to fulfil theirprofessional obligations to multipleconstituencies including patients, thecommunity and themselves. Patients need powerto formulate their values, articulate andachieve health needs, and fulfil theirresponsibilities. However, both parties canuse or misuse power. The ethical effectivenessof a health system is maximised by empoweringdoctors and patients to develop `adult-adult'rather than `adult-child' relationships thatrespect and enable autonomy, accountability,fidelity and humanity. Even in adult-adultrelationships, conflicts and complexitiesarise. Lack of (...) concordance between doctors andpatients can encourage paternalism but may bebest resolved through negotiated care. Afurther area of conflict involves the `doubleagency' of doctors for both patients and thecommunity. Empowerment of all players is notalways possible but is most likely where eachparty considers and acknowledges power issues. (shrink)

Both the theory that traumatic childhood memories can be repressed, and the reliability of the techniques used to retrieve these memories are challenged in this paper. Questions are raised about the robustness of the theory and the literature that purports to provide scientific evidence for it. Evidence to this end is provided by the demographic and qualitative results of a research study conducted by the authors which surveyed New Zealand families in which one member had accused another (or others) of (...) sexual abuse on the basis of recovered memories. It is shown that a number of these allegations involve very low probability events. Since memory repression theory is not currently scientifically substantiated it is argued that care needs to be taken in the mental health, legal and insurance compensation arenas. Memories recalled during therapy may be treated as metaphorical but, in the absence of corroborative evidence, should not be considered factually true. Clinicians who wish to use memory recovery techniques should inform patients of their experimental and controversial nature, point out potential adverse effects, and obtain consent before proceeding. (shrink)

Background Ethics committees typically apply the common principles of autonomy, nonmaleficence, beneficence and justice to research proposals but with variable weighting and interpretation. This paper reports a comparison of ethical requirements in an international cross-cultural study and discusses their implications. Discussion The study was run concurrently in New Zealand, UK, Israel, Canada and USA and involved testing hypotheses about believability of testimonies regarding alleged child sexual abuse. Ethics committee requirements to conduct this study ranged from nil in Israel to considerable (...) amendments designed to minimise participant harm in New Zealand. Assessment of minimal risk is a complex and unreliable estimation further compounded by insufficient information on probabilities of particular individuals suffering harm. Estimating potential benefits/ risks ratio and protecting participants' autonomy similarly are not straightforward exercises. Summary Safeguarding moral/humane principles should be balanced with promotion of ethical research which does not impede research posing minimal risk to participants. In ensuring that ethical standards are met and research has scientific merit, ethics committees have obligations to participants (to meet their rights and protect them from harm); to society (to ensure good quality research is conducted); and to researchers (to treat their proposals with just consideration and respect). To facilitate meeting all these obligations, the preferable focus should be promotion of ethical research, rather than the prevention of unethical research, which inevitably results in the impediment of researchers from doing their work. How the ethical principles should be applied and balanced requires further consideration. (shrink)