Literature DB >> 34602610

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

Amanda M Willis1,2, Bronwyn Terrill3,4, Angela Pearce3, Alison McEwen5, Mandy L Ballinger4,6, Mary-Anne Young3,4.   

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.
© 2021. The Author(s), under exclusive licence to European Society of Human Genetics.

Entities:  

Mesh:

Year:  2021        PMID: 34602610      PMCID: PMC8904822          DOI: 10.1038/s41431-021-00973-z

Source DB:  PubMed          Journal:  Eur J Hum Genet        ISSN: 1018-4813            Impact factor:   4.246


  20 in total

1.  Timing and context: important considerations in the return of genetic results to research participants.

Authors:  Kate A McBride; Nina Hallowell; Martin H N Tattersall; Judy Kirk; Mandy L Ballinger; David M Thomas; Gillian Mitchell; Mary-Anne Young
Journal:  J Community Genet       Date:  2015-05-26

2.  Psychosocial impact of the lack of information given at referral about familial risk for cancer.

Authors:  Alison Metcalfe; Julie Werrett; Lucy Burgess; Collette Clifford
Journal:  Psychooncology       Date:  2007-05       Impact factor: 3.894

3.  A novel approach to offering additional genomic findings-A protocol to test a two-step approach in the healthcare system.

Authors:  Melissa Martyn; Anaita Kanga-Parabia; Elly Lynch; Paul A James; Ivan Macciocca; Alison H Trainer; Jane Halliday; Louise Keogh; Janney Wale; Ingrid Winship; Michael Bogwitz; Giulia Valente; Maie Walsh; Lilian Downie; David Amor; Mathew Wallis; Fiona Cunningham; Matthew Burgess; Natasha J Brown; Anna Jarmolowicz; Sebastian Lunke; Ilias Goranitis; Clara L Gaff
Journal:  J Genet Couns       Date:  2019-02-18       Impact factor: 2.537

Review 4.  Sociodemographic, psychosocial and clinical factors associated with uptake of genetic counselling for hereditary cancer: a systematic review.

Authors:  A M Willis; S K Smith; B Meiser; M L Ballinger; D M Thomas; M-A Young
Journal:  Clin Genet       Date:  2016-10-23       Impact factor: 4.438

5.  Connecting patients, researchers and clinical genetics services: the experiences of participants in the Australian Ovarian Cancer Study (AOCS).

Authors:  Ashley Crook; Loren Plunkett; Laura E Forrest; Nina Hallowell; Samantha Wake; Kathryn Alsop; Margaret Gleeson; David Bowtell; Gillian Mitchell; Mary-Anne Young
Journal:  Eur J Hum Genet       Date:  2014-05-14       Impact factor: 4.246

6.  Preferences of biobank participants for receiving actionable genomic test results: results of a recontacting study.

Authors:  Nora B Henrikson; Aaron Scrol; Kathleen A Leppig; James D Ralston; Eric B Larson; Gail P Jarvik
Journal:  Genet Med       Date:  2021-02-18       Impact factor: 8.822

Review 7.  Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies.

Authors:  Michael P Mackley; Benjamin Fletcher; Michael Parker; Hugh Watkins; Elizabeth Ormondroyd
Journal:  Genet Med       Date:  2016-09-01       Impact factor: 8.822

8.  Frequency of genomic secondary findings among 21,915 eMERGE network participants.

Authors: 
Journal:  Genet Med       Date:  2020-06-17       Impact factor: 8.822

9.  Secondary findings from clinical genomic sequencing: prevalence, patient perspectives, family history assessment, and health-care costs from a multisite study.

Authors:  David L Veenstra; Jonathan S Berg; Robert C Green; Leslie G Biesecker; Lucia A Hindorff; M Ragan Hart; Barbara B Biesecker; Carrie L Blout; Kurt D Christensen; Laura M Amendola; Katie L Bergstrom; Sawona Biswas; Kevin M Bowling; Kyle B Brothers; Laura K Conlin; Greg M Cooper; Matthew C Dulik; Kelly M East; Jessica N Everett; Candice R Finnila; Arezou A Ghazani; Marian J Gilmore; Katrina A B Goddard; Gail P Jarvik; Jennifer J Johnston; Tia L Kauffman; Whitley V Kelley; Joel B Krier; Katie L Lewis; Amy L McGuire; Carmit McMullen; Jeffrey Ou; Sharon E Plon; Heidi L Rehm; C Sue Richards; Edward J Romasko; Ane Miren Sagardia; Nancy B Spinner; Michelle L Thompson; Erin Turbitt; Jason L Vassy; Benjamin S Wilfond
Journal:  Genet Med       Date:  2018-10-05       Impact factor: 8.822

10.  Perceptions of best practices for return of results in an international survey of psychiatric genetics researchers.

Authors:  Gabriel Lázaro-Muñoz; Laura Torgerson; Hadley Stevens Smith; Stacey Pereira
Journal:  Eur J Hum Genet       Date:  2020-10-03       Impact factor: 4.246

View more
  3 in total

1.  Invited Commentary on "My Research Results: a program to facilitate return of clinically actionable genomic research findings" by Willis et al.

Authors:  Leslie G Biesecker
Journal:  Eur J Hum Genet       Date:  2021-11-22       Impact factor: 4.246

2.  The Clinical and Psychosocial Outcomes for Women Who Received Unexpected Clinically Actionable Germline Information Identified through Research: An Exploratory Sequential Mixed-Methods Comparative Study.

Authors:  Laura E Forrest; Rowan Forbes Shepherd; Erin Tutty; Angela Pearce; Ian Campbell; Lisa Devereux; Alison H Trainer; Paul A James; Mary-Anne Young
Journal:  J Pers Med       Date:  2022-07-07

3.  Population DNA screening for medically actionable disease risk in adults.

Authors:  Paul A Lacaze; Jane Tiller; Ingrid Winship
Journal:  Med J Aust       Date:  2022-03-10       Impact factor: 12.776

  3 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.