Ethics committees: local and national.
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Increasingly, researchers grapple with meaningful efforts to involve communities in research, recognizing that communities are distinct from individuals. We also struggle to ensure that individual participants in research are fully protected. Community advisory boards (CABs) offer an opportunity to adopt a relationships paradigm that enables researchers to anticipate and address the context in which communities understand risks and benefits, and individuals give consent. CABs provide a mechanism for community consultation that contributes to protecting communities and fostering meaningful research. Furthermore, CABs can help us to re-create informed consent as a process. It is critical that we conduct research to understand the role of CABs in the informed consent process.
Australia has so far been spared serious mishaps in health research, but rising pressures on researchers, deemed to have contributed to two deaths of research participants in the United States, clearly also exist in Australia. Health research investment in our institutions is large and represents an often overlooked area of risk by boards of management. Research governance (the framework through which institutions are ultimately accountable for the scientific quality, ethical acceptability and safety of research conducted in the institutions) has not received sufficient attention. An adequate governance framework requires institutions to have policies and procedures in place to meet national ethical, legal and research practice standards. We suggest that many institutions presently do not have such frameworks in place and inappropriately rely too heavily on human research ethics committees. To ensure ongoing adequate protection of research participants, we recommend some simple improvements for research governance and suggest ways by which institutions can demonstrate adherence to agreed national standards.
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