Abstract
Clinical genetics units hold large amounts of information which could be utilised to benefit patients and their families. In Australia, a national research database, the Inherited Cancer Connect (ICCon) database, is being established that comprises clinical genetic data held for all carriers of mutations in cancer predisposition genes. Consumer input was sought to establish the acceptability of the inclusion of clinical genetic data into a research database. A qualitative approach using a modified nominal group technique was used to collect data through consumer forums conducted in three Australian states. Individuals who had previously received care from Familial Cancer Centres were invited to participate. Twenty-four consumers participated in three forums. Participants expressed positive attitudes about the establishment of the ICCon database, which were informed by the perceived benefits of the database including improved health outcomes for individuals with inherited cancer syndromes. Most participants were comfortable to waive consent for their clinical information to be included in the research database in a de-identified format. As major stakeholders, consumers have an integral role in contributing to the development and conduct of the ICCon database. As an initial step in the development of the ICCon database, the forums demonstrated consumers’ acceptance of important aspects of the database including waiver of consent.
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Acknowledgements
We thank the individuals who participated in the consumer forums, the ICCon Partnership Consumer Advisory Panel and the staff at the FCCs who assisted with the ethics and recruitment processes.
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Ethics approval was gained from each hospital to recruit patients from their embedded genetic services (PMCC 13/71L, POW 13/252, KE 2013097EW) to take part in a consumer forum at that site.
Funding
The ICCon Partnership is funded by the Cancer Council New South Wales Strategic Research Partnership (STREP) scheme.
Conflict of interest
The authors, Laura Forrest, Letitia Thrupp, Lara Petelin, Kate Richardson, Lyon Mascarenhas and Mary-Anne Young, declare that they have no conflict of interest. Gillian Mitchell received honoraria from AstraZenica for attending an advisory board and associated travel costs in 2014 and 2015.
Ethical approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional human research ethics committees and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.
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Informed consent was obtained from all individual participants included in the study.
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Forrest, L., Mitchell, G., Thrupp, L. et al. Consumer attitudes towards the establishment of a national Australian familial cancer research database by the Inherited Cancer Connect (ICCon) Partnership. J Community Genet 9, 57–64 (2018). https://doi.org/10.1007/s12687-017-0323-7
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DOI: https://doi.org/10.1007/s12687-017-0323-7