The Melanoma Genomics Managing Your Risk Study

Understanding the impact of personal genetic risk of melanoma

About the study 

The Melanoma Genomics Managing Your Risk Study is about understanding the impact of informing people about their personal genetic risk of melanoma, and to see whether this could be used as a new approach for helping prevent melanoma and other skin cancers. Melanoma is the most serious form of skin cancer, but in many cases it can be prevented and if detected early then the prognosis is usually good. An individual’s genetic variation can influence their chances of developing melanoma, and this genetic risk information (in combination with information on preventative behaviours and skin checking) is a new potential strategy for helping prevent melanoma and other skin cancers and encouraging early detection.

We have recruited 1,025 participants from across Australia to take part in the Managing Your Risk Study. Recruitment is now closed. Participants in the study are randomly assigned to one of two study groups, a ‘genetic risk’ group or ‘usual advice’ group.

  • Genetic risk group - participants receive information on their personal genetic risk of melanoma, a telephone call from a genetic counsellor, and a booklet on melanoma prevention and early detection.
  • Usual advice group - participants receive a booklet on melanoma prevention and early detection.

During the study, participants complete questionnaires and wear a small wristband over 10 days to measure how much sun (UV) their body is exposed to.

Find out more about the Managing Your Risk Study from Professor Anne Cust

Why is the study important?

Australia has about 14,500 new melanoma diagnoses and over 1,700 deaths each year, and is a relatively common cancer, especially among young adults. Overall, Australia and New Zealand have the highest melanoma rates in the world. More than 80% of melanomas in Australia could be prevented through better sun protection, and when melanoma is detected at an early stage the prognosis is usually good. However, some people are unaware of their risk. This study aims to find out if giving information about melanoma genetic risk might be helpful for improving melanoma prevention and screening in the Australian population, as well as any other advantages or disadvantages of giving this type of information. We hope that the results from this study will help us to improve ways of preventing melanoma and other skin cancers, and perhaps other cancers in the future.

Funding and endorsements

This study is funded through a 4-year National Health and Medical Research Council (NHMRC) project grant and has undergone scientific peer review as part of the NHMRC funding process. The study has been endorsed by the Australian and New Zealand Melanoma Trials Group (ANZMTG; 04.17), which includes a scientific and consumer review process. This study is also registered with the Australian New Zealand Clinical Trials Registry (ACTRN12617000691347).

Meet our team

Professor Anne Cust
Cancer Epidemiologist, Sydney School of Public Health and Melanoma Institute Australia, The University of Sydney

Professor Ainsley Newson
Professor of Bioethics, Sydney School of Public Health, The University of Sydney

Professor Rachael Morton 
Director of Health Economics, NHMRC Clinical Trials Centre, The University of Sydney

Professor Michael Kimlin
Radiation Epidemiologist and Foundation Chair in Cancer Prevention, University of the Sunshine Coast

Associate Professor Louise Keogh
Health Sociologist, University of Melbourne

Dr Matthew Law
Statistical Geneticist, QIMR Berghofer Medical Research Institute, Brisbane

Associate Professor Judy Kirk
Specialist in Cancer Genetics, Westmead Clinical School and Westmead Institute for Medical Research, The University of Sydney

Professor Peter Kanetsky
Chair and Program Leader of Cancer Epidemiology, H. Lee Moffitt Cancer Center and Research Institute Professor of Oncologic Sciences, University of South Florida

Professor Graham Mann
Director, The John Curtin School of Medical Research, ANU College of Health and Medicine

Professor Hugh Dawkins
Chief Health Advisor, HBF
Former Director of the Office of Population Health Genomics, Government of Western Australia

Dr Jacqueline Savard 
Lecturer in Health Ethics, Law and Professionalism, Deakin University

Kate Dunlop 
Director of the Centre for Genetics Education, NSW Health

Professor Lyndal Trevena 
Professor, Primary Health Care, University of Sydney

Professor Mark Jenkins 
Genetic Epidemiologist, Director of the Centre for Epidemiology & Biostatistics, University of Melbourne

Associate Professor Martin Allen 
Associate Professor, Electrical and Computer Engineering, University of Canterbury

Professor Phyllis Butow 
NHMRC Principal Research Fellow and Director of the Medical Psychology Research Unit, the University of Sydney

Associate Professor Sarah Wordsworth 
Associate Professor, Health Economics Research Centre, University of Oxford

Dr Serigne Lo
Senior Research Fellow, Melanoma Institute Australia, University of Sydney

FAQs

There are a number of factors that contribute to an individual’s chances of developing melanoma, these include:

  • Too much sun exposure, sunburn or using a solarium tanning machine, especially during childhood and adolescence.
  • Having lots of moles.
  • Having other types of skin cancer, for example basal cell carcinoma (BCC) and squamous cell carcinoma (SCC).
  • Fair skin, red hair, blue eyes, or skin that burns easily.
  • Older age: like most cancers, the risk of developing melanoma increases with age. Melanoma is most common in people aged over 50. While younger people are less likely to get cancer, in those that do, melanoma skin cancer is the most commonly diagnosed cancer for people aged between 15 and 44.
  • Family history: relatives in your family who have had melanoma, especially if they developed it at a young age.
  • Immuno-suppression.
  • Genetic factors that can be inherited in families.

Resources

  • Fenton GL, Smit AK, Keogh L, Cust AE. Exploring the emotional and behavioural reactions to receiving personalized melanoma genomic risk information: a qualitative study. Br J Dermatol. 2019;180(6):1390-1396.
  • Morton RL, Asher R, Peyton E, et al. Risk attitudes and sun protection behaviour: Can behaviour be altered by using a melanoma genomic risk intervention? Cancer Epidemiol. 2019;61:8-13.
  • Smit AK, Newson AJ, Keogh L, et al. GP attitudes to and expectations for providing personal genomic risk information to the public: a qualitative study. BJGP Open. 2019;3(1):bjgpopen18X101633.
  • Smit AK, Newson AJ, Morton RL, Kimlin M, Keogh L, Law MH, Kirk J, Dobbinson S, Kanetsky PA, Fenton G, Allen M, Butow P, Dunlop K, Trevena L, Lo S, Savard J, Dawkins H, Wordsworth S, Jenkins M, Mann G, Cust AE. The Melanoma Genomics Managing Your Risk Study: a protocol for a randomized controlled trial of the impact of personal genomic risk information on skin cancer prevention behaviors. Contemp Clin Trials. 2018 Jul;70:106-116. doi: 10.1016/j.cct.2018.05.014. Epub 2018 May 23.
  • Smit AK, Newson A, Best M, Badcock C, Butow P, Kirk J, Dunlop K, Fenton G, Cust AE. Distress, uncertainty and positive experiences associated with receiving information on personal genomic risk of melanoma. Eur J Hum Genet. 2018 Apr 30. doi: 10.1038/s41431-018-0145-z.
  • Cust AE, Fenton GL, Smit AK, Espinoza D, Dobbinson S, Brodie A, Tran Cam Dang H, Kimlin MG. Validation of questionnaire and diary measures of time outdoors against an objective measure of personal ultraviolet radiation exposure. Photochem Photobiol. 2018 Feb 8. doi: 10.1111/php.12893.
  • Fenton GL, Smit AK, Freeman L, Badcock C, Dunlop K, Butow PN, Kirk J, Cust AE. Development and evaluation of a telephone communication protocol for the delivery of personalized melanoma genomic risk to the general population. J Genet Couns. 2018;27(2): 370-380.
  • Smit AK, Keogh LA, Newson AJ, Butow PN, Dunlop K, Morton RL, Kirk J, Espinoza D, Cust AE. Does personalised melanoma genomic risk information trigger conversations about skin cancer prevention and skin examination with family, friends and health professionals? Br J Dermatol. 2017 177(3):779-790.
  • Smit AK, Espinoza D, Newson AJ, Morton RL, Fenton G, Freeman L, Dunlop K, Butow PN, Law MH, Kimlin MG, Keogh LA, Dobbinson SJ, Kirk J, Kanetsky PA, Mann GJ, Cust AE. A pilot randomised controlled trial of the feasibility, acceptability, and impact of giving information on personalised genomic risk of melanoma to the public. Cancer Epidemiol Biomarkers Prev. 2017 26:212-221.
  • Smit AK, Keogh LA, Hersch J, Newson AJ, Butow P, Williams G, Cust AE. Public preferences for communicating personal genomic risk information: a focus group study. Health Expect. 2016 Dec;19(6):1203-1214.
  • Smit AK, Keogh LA, Newson AJ, Hersch J, Butow P, Cust AE. Exploring the potential emotional and behavioural impact of providing information on personalised genomic risk to the general public: a focus group study. Public Health Genomics. 2015;18(5):309-17.