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Ethical and practical implications of returning genetic research results: two Australian case studies

Jane Tiller, Alison H Trainer, Ian Campbell and Paul A Lacaze
Med J Aust || doi: 10.5694/mja2.50842
Published online: 9 November 2020

Should medically significant genetic results be offered to research participants or their at‐risk relatives?

Australian research studies now generate genetic information on thousands of participants. Some genetic results, present in a small portion of participants (< 5%), are considered medically actionable, meaning they are associated with increased risk of adult‐onset diseases, where effective risk management, prevention or treatment exists (eg, inherited cancer or cardiac disorders).1 The National Statement on Ethical Conduct in Human Research,2 which considers genomic research at Chapter 3.3, now requires an ethically defensible plan for return (or non‐return) of genetic research results. Box 1 summarises the guidelines that are relevant to the return of genetic results to research participants.2

  • Jane Tiller1
  • Alison H Trainer2
  • Ian Campbell2
  • Paul A Lacaze1

  • 1 Monash University, Melbourne, VIC
  • 2 Familial Cancer Centre, Peter MacCallum Cancer Institute, Melbourne, VIC

Correspondence: jane.tiller@monash.edu

Acknowledgements: 

Paul Lacaze is the primary investigator and Jane Tiller is an investigator on the ASPREE genomics sub‐study. Ian Campbell is the lead investigator and Alison Trainer is an investigator on the Lifepool study. We acknowledge the contributions of the Lifepool research team, the ASPREE research team and the genetics department at Royal Melbourne Hospital.

Competing interests:

No relevant disclosures.

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