Abstract
The issue of recontacting past genetics patients is increasingly relevant, particularly with the introduction of next-generation sequencing. Improved testing can provide additional information on the pathogenicity and prevalence of genetic variants, often leading to a need to recontact patients. Some international genetics societies have position statements and recommendations to guide genetic health professionals (GHPs) navigating the legal, ethical and practical issues of recontacting. In the absence of a standardised Australasian protocol, we explored the experiences and opinions of Australasian GHPs regarding patient follow-up and recontacting practices. Forty-five respondents completed an online survey. Most respondents indicated that recontacting occurred on an ad hoc basis, but most genetic services relied on patients (or family) initiating recontact. Implementation of a routine recontacting system was widely dismissed by 73% of respondents, citing lack of resources, limited information on legal responsibility and setting unrealistic expectations as common barriers. If recontact was contemplated, e-communication was an acceptable first step. This study identified the need for integrated familial cancer registries to assist under-resourced genetic services to maintain up-to-date patient records. Developing a standard recontacting protocol with flexibility to account for patient individuality and circumstances might enable provision of equitable service within Australasia.
Availability of data and material
The data is collected and stored on secured servers of the Genetic Services of WA. No identifiable information of the respondents was collected.
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Not applicable.
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Acknowledgements
The authors would like to express their gratitude to Dr Daniel Carrieri and co-authors for allowing us to model several survey questions based on their publication. We thank the genetic health professionals for their time, the HGSA for assistance with recruitment and to GSWA for their support.
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Bhavya Vora conceived of the presented idea. Bhavya Vora, Lyn Schofield, Cassandra Nichols and Helen Mountain contributed to the design and implementation of the research, to the analysis of the results and to the writing of the manuscript.
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Vora, B.B., Mountain, H., Nichols, C. et al. Opinions and experiences of recontacting patients: a survey of Australasian genetic health professionals. J Community Genet 13, 193–199 (2022). https://doi.org/10.1007/s12687-021-00570-z
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DOI: https://doi.org/10.1007/s12687-021-00570-z