IDEAS home Printed from https://ideas.repec.org/a/pal/palcom/v10y2023i1d10.1057_s41599-023-01935-0.html
   My bibliography  Save this article

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

Author

Listed:
  • 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
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1057/s41599-023-01935-0
    File Function: Abstract
    Download Restriction: Access to full text is restricted to subscribers.

    File URL: https://libkey.io/10.1057/s41599-023-01935-0?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    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.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Wendy P. Geuverink & Janneke T. Gitsels & Martina C. Cornel & Bert Jan Lietaert Peerbolte & Christina Prinds & Carla G. El & Linda Martin, 2024. "The impact of counselors’ values and religious beliefs on their role identity and perspectives on heritable genome editing: a qualitative interview study," Palgrave Communications, Palgrave Macmillan, vol. 11(1), pages 1-10, December.
    2. Alexandra C.H. Nowakowski, 2019. "The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis," Social Sciences, MDPI, vol. 8(3), pages 1-18, March.
    3. Saukko, Paula M. & Richards, Suzanne H. & Shepherd, Maggie H. & Campbell, John L., 2006. "Are genetic tests exceptional? Lessons from a qualitative study on thrombophilia," Social Science & Medicine, Elsevier, vol. 63(7), pages 1947-1959, October.
    4. Melanie Goisauf & Kaya Akyüz & Gillian M. Martin, 2020. "Moving back to the future of big data-driven research: reflecting on the social in genomics," Palgrave Communications, Palgrave Macmillan, vol. 7(1), pages 1-9, December.
    5. Whitmarsh, Ian & Davis, Arlene M. & Skinner, Debra & Bailey, Donald Jr., 2007. "A place for genetic uncertainty: Parents valuing an unknown in the meaning of disease," Social Science & Medicine, Elsevier, vol. 65(6), pages 1082-1093, September.
    6. Weiner, Kate, 2011. "Exploring genetic responsibility for the self, family and kin in the case of hereditary raised cholesterol," Social Science & Medicine, Elsevier, vol. 72(11), pages 1760-1767, June.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:pal:palcom:v:10:y:2023:i:1:d:10.1057_s41599-023-01935-0. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: https://www.nature.com/ .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.