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Between desire and fear: a qualitative interview study exploring the perspectives of carriers of a genetic condition on human genome editing

Author

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  • Wendy Geuverink

    (location Vrije Universiteit Amsterdam, Human Genetics
    Amsterdam Reproduction and Development Research Institute)

  • Carla El

    (location Vrije Universiteit Amsterdam, Human Genetics
    Amsterdam Public Health Research Institute)

  • Martina Cornel

    (location Vrije Universiteit Amsterdam, Human Genetics
    Amsterdam Public Health Research Institute)

  • Bert Jan Lietaert Peerbolte

    (Vrije Universiteit Amsterdam)

  • Janneke Gitsels

    (Amsterdam Public Health Research Institute
    location Vrije Universiteit Amsterdam, Midwifery Science
    Midwifery Academy Amsterdam Groningen, InHolland
    University of Groningen, University Medical Center Groningen)

  • Linda Martin

    (Amsterdam Public Health Research Institute
    location Vrije Universiteit Amsterdam, Midwifery Science
    Midwifery Academy Amsterdam Groningen, InHolland
    University of Groningen, University Medical Center Groningen)

Abstract

Human genome editing technologies are advancing at a rapid pace, and their potential disruptive implications lead to ethical and societal questions that cannot be addressed by scientists alone. Further consideration of different stakeholders’ views on human genome editing is crucial to translate society’s needs and values into thoughtful regulations and policies. We therefore explored the views of carriers of autosomal dominant disorders on somatic and heritable genome editing (SGE and HGE) and the role of their (secular or religious) worldviews. This group of stakeholders would be most impacted by the eventual clinical application of genome editing technologies and therefore their views must be taken into account. Ten in-depth semi-structured interviews were conducted, and data were analysed using reflexive thematic analysis. We found an overarching theme: ‘Balancing between the desire to prevent serious diseases in individuals through HGE, and the fear of the harmful impact on society and nature’ and three main themes: ‘The benefits of SGE and HGE for individuals’, ‘the societal consequences of using HGE’, and ‘the consequences of interfering with nature through HGE’. Although the lived experiences of the participants varied, they were positive towards the safe use of SGE regardless of the severity of conditions, and most participants were positive towards the use of HGE but only to prevent severe genetic conditions. A few participants were against using HGE in any case, regardless of the severity of a condition, based on their religious beliefs. However, most participants with either religious or secular worldviews reported similar views on HGE, both regarding their desire to prevent serious genetic disorders and their fear of the impact on society and nature if HGE were implemented more widely. Reflecting on HGE involved complex and often ambivalent views. When engaging different stakeholders, space is needed for ambivalence and the weighing of values.

Suggested Citation

  • Wendy Geuverink & Carla El & Martina Cornel & Bert Jan Lietaert Peerbolte & Janneke Gitsels & Linda Martin, 2023. "Between desire and fear: a qualitative interview study exploring the perspectives of carriers of a genetic condition on human genome editing," Palgrave Communications, Palgrave Macmillan, vol. 10(1), pages 1-9, December.
    • Handle: RePEc:pal:palcom:v:10:y:2023:i:1:d:10.1057_s41599-023-01935-0
    DOI: 10.1057/s41599-023-01935-0
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    References listed on IDEAS

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    1. Mara Almeida & Robert Ranisch, 2022. "Beyond safety: mapping the ethical debate on heritable genome editing interventions," Palgrave Communications, Palgrave Macmillan, vol. 9(1), pages 1-14, December.
    2. Michael Morrison & Stevienna de Saille, 2019. "CRISPR in context: towards a socially responsible debate on embryo editing," Palgrave Communications, Palgrave Macmillan, vol. 5(1), pages 1-9, December.
    3. Petersen, Alan, 2006. "The best experts: The narratives of those who have a genetic condition," Social Science & Medicine, Elsevier, vol. 63(1), pages 32-42, July.
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