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‘There is a lot of good in knowing, but there is also a lot of downs’: public views on ethical considerations in population genomic screening
  1. Amelia K Smit1,2,3,
  2. Gillian Reyes-Marcelino2,
  3. Louise Keogh4,
  4. Anne E Cust2,3,
  5. Ainsley J Newson1
  1. 1Faculty of Medicine and Health, Sydney School of Public Health, Sydney Health Ethics, The University of Sydney, Sydney, New South Wales, Australia
  2. 2Faculty of Medicine and Health, Sydney School of Public Health, Cancer Epidemiology and Prevention Research, The University of Sydney, Sydney, New South Wales, Australia
  3. 3Melanoma Institute Australia, The University of Sydney, Sydney, New South Wales, Australia
  4. 4Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Victoria, Australia
  1. Correspondence to Professor Ainsley J Newson, Faculty of Medicine and Health, Sydney School of Public Health, Sydney Health Ethics, The University of Sydney, Sydney, NSW 2006, Australia; AINSLEY.NEWSON{at}SYDNEY.EDU.AU

Abstract

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.

  • population policy
  • ethics
  • public health ethics
  • genetic screening/testing
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Footnotes

  • Twitter @_ameliaksmit, @biomedethics

  • Contributors All authors contributed to the study design and qualitative data collection methods for the broader project. All authors contributed to the data analysis and manuscript writing. All authors discussed the content of the article, critically revised multiple drafts of the manuscript and approved the final version.

  • Funding This study received funding from Sydney Catalyst Translational Cancer Research Centre and The University of Sydney Cancer Strategic Priority Area for Research Collaboration (SPARC) Implementation Scheme. AKS received a Research Training Program (RTP) Stipend Scholarship and a Merit Top Up Scholarship from the University of Sydney, and a Melanoma Institute Australia Postgraduate Research Scholarship. AEC received Career Development Fellowships from the National Health and Medical Research Council of Australia (NHMRC; 1147843).

  • Disclaimer The funding bodies had no role in the data collection, interpretation or reporting of this study.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval Ethics approval for this study was obtained from the University of Sydney ethics board.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon request (subject to relevant ethics approval from the Sydney University Human Research Ethics Committee that aproved the original study).

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