scholarly journals Emotional and behavioural reactions to melanoma genomic risk information

2019 ◽  
Vol 180 (6) ◽  
Author(s):  
G.L. Fenton ◽  
A.K. Smit ◽  
L. Keogh ◽  
A.E. Cust

2015 ◽  
Vol 19 (6) ◽  
pp. 1203-1214 ◽  
Author(s):  
Amelia K. Smit ◽  
Louise A. Keogh ◽  
Jolyn Hersch ◽  
Ainsley J. Newson ◽  
Phyllis Butow ◽  
...  


10.1186/gm37 ◽  
2009 ◽  
Vol 1 (3) ◽  
pp. 37 ◽  
Author(s):  
Nora B Henrikson ◽  
Deborah Bowen ◽  
Wylie Burke


Author(s):  
Amelia K. Smit ◽  
Martin Allen ◽  
Brooke Beswick ◽  
Phyllis Butow ◽  
Hugh Dawkins ◽  
...  

Abstract Purpose We evaluated the impact of personal melanoma genomic risk information on sun-related behaviors and psychological outcomes. Methods In this parallel group, open, randomized controlled trial, 1,025 Australians of European ancestry without melanoma and aged 18–69 years were recruited via the Medicare database (3% consent). Participants were randomized to the intervention (n = 513; saliva sample for genetic testing, personalized melanoma risk booklet based on a 40-variant polygenic risk score, telephone-based genetic counseling, educational booklet) or control (n = 512; educational booklet). Wrist-worn ultraviolet (UV) radiation dosimeters (10-day wear) and questionnaires were administered at baseline, 1 month postintervention, and 12 months postbaseline. Results At 12 months, 948 (92%) participants completed dosimetry and 973 (95%) the questionnaire. For the primary outcome, there was no effect of the genomic risk intervention on objectively measured UV exposure at 12 months, irrespective of traditional risk factors. For secondary outcomes at 12 months, the intervention reduced sunburns (risk ratio: 0.72, 95% confidence interval: 0.54–0.96), and increased skin examinations among women. Melanoma-related worry was reduced. There was no overall impact on general psychological distress. Conclusion Personalized genomic risk information did not influence sun exposure patterns but did improve some skin cancer prevention and early detection behaviors, suggesting it may be useful for precision prevention. There was no evidence of psychological harm.



2015 ◽  
Vol 18 (5) ◽  
pp. 309-317 ◽  
Author(s):  
Amelia K. Smit ◽  
Louise A. Keogh ◽  
Ainsley J. Newson ◽  
Jolyn Hersch ◽  
Phyllis Butow ◽  
...  


2020 ◽  
pp. medethics-2019-105934
Author(s):  
Amelia K Smit ◽  
Gillian Reyes-Marcelino ◽  
Louise Keogh ◽  
Anne E Cust ◽  
Ainsley J Newson

Publics are key stakeholders in population genomic screening and their perspectives on ethical considerations are relevant to programme design and policy making. Using semi-structured interviews, we explored social views and attitudes towards possible future provision of personalised genomic risk information to populations to inform prevention and/or early detection of relevant conditions. Participants were members of the public (n=30) who had received information on their personal genomic risk of melanoma as part of a research project. The focus of the analysis presented here is participants’ views regarding ethical considerations relevant to population genomic screening more generally. Data were analysed thematically and four key themes related to ethical considerations were identified: (i) personal responsibility for health: ‘forewarned is forearmed’; (ii) perceptions of, and responses to, genetic fatalism; (iii) implications for parenting and reproduction; (iv) divided views on choosing to receive genomic risk information. Ethical considerations underlying these themes include the valorisation of information and choice, paternalism, non-directiveness and increasing responsibilisation of individuals in health and healthcare. These findings arguably indicate a thin public conceptualisation of population genomic testing, which draws heavily on how these themes tend to be described in existing social discourses. Findings suggest that further public engagement is required to increase complexity of debate, to consider (for example) the appropriate place of individual and social interests in population genomic testing. Further discernment of relevant ethical approaches, drawing on ethical frameworks from both public health and clinical settings, will also assist in determining the appropriate implementation of population genomic screening for complex conditions.



2019 ◽  
Vol 180 (6) ◽  
pp. 1390-1396 ◽  
Author(s):  
G.L. Fenton ◽  
A.K. Smit ◽  
L. Keogh ◽  
A.E. Cust


BJGP Open ◽  
2019 ◽  
Vol 3 (1) ◽  
pp. bjgpopen18X101633
Author(s):  
Amelia K Smit ◽  
Ainsley J Newson ◽  
Louise Keogh ◽  
Megan Best ◽  
Kate Dunlop ◽  
...  

BackgroundAs part of a pilot randomised controlled trial examining the impact of personal melanoma genomic risk information on behavioural and psychosocial outcomes, GPs were sent a booklet containing their patient’s genomic risk of melanoma.AimUsing this booklet as an example of genomic risk information that might be offered on a population-level in the future, this study explored GP attitudes towards communicating genomic risk information and resources needed to support this process.Design & settingSemi-structured interviews were conducted with 22 Australian GPs.MethodThe interviews were recorded and transcribed, and data were analysed thematically.ResultsGPs in this sample believed that communicating genomic risk may become a responsibility within primary care and they recommended a shared decisionmaking approach to guide the testing process. Factors were identified that may influence how and when GPs communicate genomic risk information. GPs view genomics-based risk as one of many disease risk factors and feel that this type of information could be applied in practice in the context of overall risk assessment for diseases for which prevention and early detection strategies are available. They believe it is important to ensure that patients understand their genomic risk and do not experience long-term adverse psychological responses. GPs desire clinical practice guidelines that specify recommendations for genomic risk assessment and patient management, point-of-care resources, and risk prediction tools that include genomic and traditional risk factors.ConclusionThese findings will inform the development of resources for preparing GPs to manage and implement genomic risk information in practice.



2011 ◽  
Vol 21 (3) ◽  
pp. 423-432 ◽  
Author(s):  
Erynn S. Gordon ◽  
Georgia Griffin ◽  
Lisa Wawak ◽  
Hauchie Pang ◽  
Sarah E. Gollust ◽  
...  




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