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My Research Results: a program to facilitate return of clinically actionable genomic research findings

European Journal of Human Genetics volume 30, pages 363–366 (2022)Cite this article

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A Comment to this article was published on 22 November 2021

Abstract

Researchers and research participants increasingly support returning clinically actionable genetic research findings to participants, but researchers may lack the skills and resources to do so. In response, a genetic counsellor-led program to facilitate the return of clinically actionable findings to research participants was developed to fill the identified gap in research practice and meet Australian research guidelines. A steering committee of experts reviewed relevant published literature and liaised with researchers, research participants and clinicians to determine the scope of the program, as well as the structure, protocols and infrastructure. A program called My Research Results (MyRR) was developed, staffed by genetic counsellors with input from the steering committee, infrastructure services and a genomic advisory committee. MyRR is available to Human Research Ethics Committee approved studies Australia-wide and comprises genetic counselling services to notify research participants of clinically actionable research findings, support for researchers with developing an ethical strategy for managing research findings and an online information platform. The results notification strategy is an evidence-based two-step model, which has been successfully used in other Australian studies. MyRR is a translational program supporting researchers and research participants to access clinically actionable research findings.

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Fig. 1: A flowchart of participant pathways through the MyRR two-step notification process.

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Data availability

Data sharing not applicable to this article as no datasets were generated or analysed during the current study.

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Acknowledgements

The authors would like to acknowledge the contribution of the Genomics Advisory Committee Members: A/Prof Kathy Tucker, A/Prof Jodie Ingles, Prof Leslie Burnett, Prof Ingrid Winship, Dr Lesley Andrews, Ms Ebony Richardson and Dr Thomas Ohnesorg. The authors would also like to acknowledge the contribution of Simone Busija and Radhika Rajkumar to the development of this platform. This work was supported by The Kinghorn Foundation.

Funding

This work was supported by The Kinghorn Foundation.

Author information

Authors and Affiliations

  1. Kinghorn Centre for Clinical Genomics, Garvan Institute of Medical Research, Darlinghurst, NSW, 2010, Australia

    Amanda M. Willis, Bronwyn Terrill, Angela Pearce & Mary-Anne Young

  2. St Vincent’s Clinical School, UNSW Medicine and Health, UNSW Sydney, Sydney, NSW, 2052, Australia

    Amanda M. Willis, Bronwyn Terrill, Mandy L. Ballinger & Mary-Anne Young

  3. Genetic Counselling, Graduate School of Health, University of Technology Sydney, Sydney, NSW, 2007, Australia

    Alison McEwen

  4. Cancer Theme, Garvan Institute of Medical Research, Darlinghurst, NSW, 2010, Australia

    Mandy L. Ballinger

Authors
  1. Amanda M. Willis
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  2. Bronwyn Terrill
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  3. Angela Pearce
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  4. Alison McEwen
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  5. Mandy L. Ballinger
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  6. Mary-Anne Young
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Contributions

AM, AP, AW, BT, M-AY and MB contributed to the conceptualisation and design of the program. AP, AW, BT and M-AY were responsible for project administration. AW drafted the paper and AM, AP, AW, BT, M-AY and MB reviewed and edited the paper.

Corresponding author

Correspondence to Amanda M. Willis.

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The authors declare no competing interests.

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This research did not involve human subjects, material or data; therefore ethics approval was not required.

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Willis, A.M., Terrill, B., Pearce, A. et al. My Research Results: a program to facilitate return of clinically actionable genomic research findings. Eur J Hum Genet 30, 363–366 (2022). https://doi.org/10.1038/s41431-021-00973-z

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