Zeps N.,St John of God HealthCare |
Bledsoe M.J.,George Washington University
Clinical Biochemist Reviews | Year: 2015
Biobanks of human biospecimens involving tissue taken from surgery require close relationships with diagnostic pathology practices. As most of the tissue will be analysed using genetic or genomic technologies there is the possibility that new information is created that could be of relevance to the donors. Although attention has been recently focused on the responsibilities that may arise from researchers and biobanks in terms of giving back individual genetic research results (IGRRs) to research participants, little has been said in relation to the role of pathology services. In this Commentary, we summarise the issues with respect to pathology services and what guidelines and professional practice documents say about their responsibilities. We also provide points to consider in the development of an ethically defensible plan for giving back individual research results.
Holliday C.,ACG Research and Healthcare |
Kwok J.,ACG Research and Healthcare |
Yip K.,ACG Research and Healthcare |
Zeps N.,St John of God HealthCare
Cancer Forum | Year: 2014
There is an increasing emphasis on community and consumer engagement in cancer research, from identifying priorities to reviewing grants from a consumer perspective. It is clear that there is great interest from the community and consumers to be more actively involved in research, and many organisations and research institutions have responded by convening consumer advisory panels, including consumers on boards and committees, and including consumers and the community in forums and research seminars. While the opportunities available for consumers to participate in research are welcome, current mechanisms to engage with consumers often appear to be tokenistic and bureaucratic. Bedside to Bench, a research, community engagement and health education organisation, conducted an online, consumer engagement in research survey over four weeks. The aim of the survey was to determine when and how cancer patients and their families how they would like to be involved in research. The survey was developed following feedback from consumers at the Australian Pancreatic Genome Initiative's annual research symposium, that suggested current opportunities for consumers to engage in research were limited. Eighty two cancer patients and carers responded to the survey. The majority of respondents (82%) stated that they were interested in being involved in the decision-making process in relation to cancer research. The greatest area of interest was in having access to the results of research projects (23%) and providing feedback to researchers once the projects are developed (23%). Other areas of interest were the development of research projects with researchers (17%), identification of research priorities (17%), with the lowest area of interest being grant reviews (13%).The results of this study suggest that the majority of consumers want to be involved in research in some way, however, given the option, there is potentially only a subset of consumers interested in the review of research grants. What is clear is that, whatever the mechanisms for consumer engagement, strategies, policies and resources need to be available in order to support all stakeholders improve the practice of research involving consumers. The results of this study will be useful to guide future research and policy decisions in relation to consumer engagement in research.
Saran U.,University of Western Australia |
Arfuso F.,University of Western Australia |
Zeps N.,St John of God HealthCare |
Zeps N.,University of Western Australia |
And 2 more authors.
BMC Cell Biology | Year: 2012
Background: Ovarian cancer is one of the most lethal malignancies in women, as it is frequently detected at an advanced stage, and cancers often become refractory to chemotherapy. Evidence suggests that dysregulation of pro-apoptotic genes plays a key role in the onset of chemoresistance. The secreted Frizzled-Related Protein (sFRP) family is pro-apoptotic and also a negative modulator of the Wnt signalling cascade. Studies have demonstrated that the re-expression of sFRPs, in particular sFRP4, is associated with a better prognosis, and that experimentally induced expression results in cell death.Results: In vitro experimental models determined that sFRP4 was differentially expressed in chemosensitive (A2780) and chemoresistant (A2780 ADR and A2780 Cis) ovarian cell lines, with chemosensitive cells expressing significantly higher levels of sFRP4. Transfection of the chemoresistant cell lines with sFRP4 significantly increased their sensitivity to chemotherapy. Conversely, silencing of sFRP4 expression in the chemosensitive cell line resulted in a corresponding increase in chemoresistance. Comparison of sFRP4 expression in tumour biopsies revealed a positive trend between sFRP4 expression and tumour grade, with mucinous cyst adenocarcinomas exhibiting significantly decreased sFRP4 levels compared to mucinous borderline tumours.Conclusions: This study indicates a role for sFRP4 as a predictive marker of chemosensitivity in ovarian cancer and suggests that this pathway may be worth exploiting for novel therapies. © 2012 Saran et al.; licensee BioMed Central Ltd.
Watson P.H.,University of British Columbia |
Watson P.H.,British Columbia BC Cancer Agency |
Watson P.H.,British Columbia Cancer Agency Deeley Research Center |
Watson P.H.,A+ Network |
And 26 more authors.
Biopreservation and Biobanking | Year: 2014
Each year funding agencies and academic institutions spend millions of dollars and euros on biobanking. All funding providers assume that after initial investments biobanks should be able to operate sustainably. However the topic of sustainability is challenging for the discipline of biobanking for several major reasons: the diversity in the biobanking landscape, the different purposes of biobanks, the fact that biobanks are dissimilar to other research infrastructures and the absence of universally understood or applicable value metrics for funders and other stakeholders. In this article our aim is to delineate a framework to allow more effective discussion and action around approaches for improving biobank sustainability. The term sustainability is often used to mean fiscally self-sustaining, but this restricted definition is not sufficient for biobanking. Instead we propose that biobank sustainability should be considered within a framework of three dimensions - financial, operational, and social. In each dimension, areas of focus or elements are identified that may allow different types of biobanks to distinguish and evaluate the relevance, likelihood, and impact of each element, as well as the risks to the biobank of failure to address them. Examples of practical solutions, tools and strategies to address biobank sustainability are also discussed. © Mary Ann Liebert, Inc.
Grizzle W.E.,University of Alabama at Birmingham |
Clark B.J.,Biobank Qatar |
Zeps N.,St John of God HealthCare |
Zeps N.,University of Western Australia
Genetics in Medicine | Year: 2012
Whether or not to give research results back to individuals whose specimens are used for biomedical research is a subject of considerable controversy. Much of the debate has been focused around the ethical and legal concerns with some consideration of broader social issues such as whether or not people will be affected by such information for employment or health care. Much less attention has been paid to biobanks that collect the specimens used to generate the research findings and the issues and operational requirements for implementing return of individual research results. In this article, we give the biobanks' perspective and highlight that given the diversity among the types of biobanks, it may be difficult to design and implement a blanket policy in this complex area. We discuss the variability in the types of biobanks and some important issues that should be considered in determining whether or not research results should be provided to individuals whose specimens are used in biomedical research. We also discuss challenges that should be considered in implementing any approaches to the return of research results. ©American College of Medical Genetics and Genomics.