IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v304y2022ics0277953620301490.html
   My bibliography  Save this article

Governing the futures of non-invasive prenatal testing: An exploration of social acceptability using the Delphi method

Author

Listed:
  • Dupras, Charles
  • Birko, Stanislav
  • Affdal, Aliya O.
  • Haidar, Hazar
  • Lemoine, Marie-Eve
  • Ravitsky, Vardit

Abstract

Non-invasive prenatal testing (NIPT) using cell-free DNA (cfDNA) offers numerous benefits to pregnant women and their families. It also raises ethical, legal and social concerns regarding, for instance, the possible effects of a routinization of prenatal genetic testing on free and informed decision-making by prospective parents, and the role of the state in governing its use. Technological advances are allowing cfDNA analyses to detect an increasing number of genetic risks and conditions in the fetus, potentially further exacerbating such concerns. From May 2015 to December 2016, we conducted a three-round Policy Delphi study (NR1 = 61, NR2 = 58, NR3 = 47; overall retention rate = 77.0%) to explore the social acceptability (SA) of current and potential future uses of NIPT in Canada according to participants with relevant professional, research or advocacy expertise. Participants came from four groups: healthcare professionals (NR3 = 14), social sciences and humanities researchers (NR3 = 13), patients/disability rights advocates (NR3 = 14), and cultural/religious communities advocates (NR3 = 6). This paper presents SA criteria and contextual contingencies relevant to the assessment of NIPT's SA according to the group. It also reports what uses (conditions or motives) participants thought should be banned, permitted, publicly funded, or promoted as a public health strategy. According to them, conditions resulting in severe pain or early death, as well as trisomies (13, 18, 21) and sex chromosome abnormalities, should be covered by Canadian public health insurance. However, there was wide agreement that direct-to-consumer NIPT should be legally banned, and that testing for fetal sex for non-medical reasons using NIPT should be either proscribed or discouraged. In addition to identifying areas of consensus, our results point to disagreement regarding, for instance, the required level of governance of whole-genome sequencing and testing for late onset conditions with low penetrance. This study also provides a model for exploring the SA of emerging technologies using the Policy Delphi method.

Suggested Citation

  • Dupras, Charles & Birko, Stanislav & Affdal, Aliya O. & Haidar, Hazar & Lemoine, Marie-Eve & Ravitsky, Vardit, 2022. "Governing the futures of non-invasive prenatal testing: An exploration of social acceptability using the Delphi method," Social Science & Medicine, Elsevier, vol. 304(C).
    • Handle: RePEc:eee:socmed:v:304:y:2022:i:c:s0277953620301490
    DOI: 10.1016/j.socscimed.2020.112930
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953620301490
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2020.112930?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. Jallinoja, P. & Hakonen, A. & Aro, A. R. & Niemelä, P. & Hietala, M. & Lönnqvist, J. & Peltonen, L. & Aula, P., 1998. "Attitudes towards genetic testing: analysis of contradictions," Social Science & Medicine, Elsevier, vol. 46(10), pages 1367-1374, March.
    2. Wustenhagen, Rolf & Wolsink, Maarten & Burer, Mary Jean, 2007. "Social acceptance of renewable energy innovation: An introduction to the concept," Energy Policy, Elsevier, vol. 35(5), pages 2683-2691, May.
    3. Rowe, Gene & Wright, George, 1999. "The Delphi technique as a forecasting tool: issues and analysis," International Journal of Forecasting, Elsevier, vol. 15(4), pages 353-375, October.
    4. Behnam Taebi, 2017. "Bridging the Gap between Social Acceptance and Ethical Acceptability," Risk Analysis, John Wiley & Sons, vol. 37(10), pages 1817-1827, October.
    5. Menegaki, Angeliki N. & Hanley, Nick & Tsagarakis, Konstantinos P., 2007. "The social acceptability and valuation of recycled water in Crete: A study of consumers' and farmers' attitudes," Ecological Economics, Elsevier, vol. 62(1), pages 7-18, April.
    6. Erika Check Hayden, 2011. "Fetal gene screening comes to market," Nature, Nature, vol. 478(7370), pages 440-440, October.
    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. Claudy, Marius C. & Parkinson, Mary & Aquino, Karl, 2024. "Why should innovators care about morality? Political ideology, moral foundations, and the acceptance of technological innovations," Technological Forecasting and Social Change, Elsevier, vol. 203(C).
    2. Prommer, Lisa & Tiberius, Victor & Kraus, Sascha, 2020. "Exploring the future of startup leadership development," Journal of Business Venturing Insights, Elsevier, vol. 14(C).
    3. Jie Ren & Jar-Der Luo & Ke Rong, 2020. "How Do Venture Capitals Build Up Syndication Ecosystems for Sustainable Development?," Sustainability, MDPI, vol. 12(11), pages 1-14, May.
    4. Koecklin, Manuel Tong & Longoria, Genaro & Fitiwi, Desta Z. & DeCarolis, Joseph F. & Curtis, John, 2021. "Public acceptance of renewable electricity generation and transmission network developments: Insights from Ireland," Energy Policy, Elsevier, vol. 151(C).
    5. Bas Kolen & Matthijs Kok & Ira Helsloot & Bob Maaskant, 2013. "EvacuAid: A Probabilistic Model to Determine the Expected Loss of Life for Different Mass Evacuation Strategies During Flood Threats," Risk Analysis, John Wiley & Sons, vol. 33(7), pages 1312-1333, July.
    6. Meissner, Philip & Brands, Christian & Wulf, Torsten, 2017. "Quantifiying blind spots and weak signals in executive judgment: A structured integration of expert judgment into the scenario development process," International Journal of Forecasting, Elsevier, vol. 33(1), pages 244-253.
    7. Lyhne, Ivar & Aaen, Sara Bjørn & Nielsen, Helle & Kørnøv, Lone & Larsen, Sanne Vammen, 2018. "Citizens’ self-mobilization, motivational factors, and the group of most engaged citizens: The case of a radioactive waste repository in Denmark," Land Use Policy, Elsevier, vol. 72(C), pages 433-442.
    8. Hogan, Jessica L. & Warren, Charles R. & Simpson, Michael & McCauley, Darren, 2022. "What makes local energy projects acceptable? Probing the connection between ownership structures and community acceptance," Energy Policy, Elsevier, vol. 171(C).
    9. Fabio Salamanca-Buentello & Mary V Seeman & Abdallah S Daar & Ross E G Upshur, 2020. "The ethical, social, and cultural dimensions of screening for mental health in children and adolescents of the developing world," PLOS ONE, Public Library of Science, vol. 15(8), pages 1-25, August.
    10. Taran Loper & Victoria L. Crittenden, 2017. "Energy Security: Shaping The Consumer Decision Making Process In Emerging Economies," Organizations and Markets in Emerging Economies, Faculty of Economics, Vilnius University, vol. 8(1).
    11. Baral, Nabin & Rabotyagov, Sergey, 2017. "How much are wood-based cellulosic biofuels worth in the Pacific Northwest? Ex-ante and ex-post analysis of local people's willingness to pay," Forest Policy and Economics, Elsevier, vol. 83(C), pages 99-106.
    12. Prianto Budi Saptono & Gustofan Mahmud & Intan Pratiwi & Dwi Purwanto & Ismail Khozen & Muhamad Akbar Aditama & Siti Khodijah & Maria Eurelia Wayan & Rina Yuliastuty Asmara & Ferry Jie, 2023. "Development of Climate-Related Disclosure Indicators for Application in Indonesia: A Delphi Method Study," Sustainability, MDPI, vol. 15(14), pages 1-25, July.
    13. Ioannidis, Romanos & Koutsoyiannis, Demetris, 2020. "A review of land use, visibility and public perception of renewable energy in the context of landscape impact," Applied Energy, Elsevier, vol. 276(C).
    14. Kaufmann, Nicholas & Carolus, Thomas & Starzmann, Ralf, 2019. "Turbines for modular tidal current energy converters," Renewable Energy, Elsevier, vol. 142(C), pages 451-460.
    15. P.W.J. de Bijl & Helanya Fourie, 2019. "The energy transition: Does ownership matter for realizing public interest objectives?," Working Papers 19-24, Utrecht School of Economics.
    16. Dugstad, Anders & Grimsrud, Kristine & Kipperberg, Gorm & Lindhjem, Henrik & Navrud, Ståle, 2020. "Acceptance of wind power development and exposure – Not-in-anybody's-backyard," Energy Policy, Elsevier, vol. 147(C).
    17. Pere Riera & Raúl Brey & Guillermo Gándara, 2008. "Bid design for non-parametric contingent valuation with a single bounded dichotomous choice format," Hacienda Pública Española / Review of Public Economics, IEF, vol. 186(3), pages 43-60, October.
    18. Antoine Boche & Clément Foucher & Luiz Fernando Lavado Villa, 2022. "Understanding Microgrid Sustainability: A Systemic and Comprehensive Review," Energies, MDPI, vol. 15(8), pages 1-29, April.
    19. Heiskanen, Aleksi & Hurmekoski, Elias & Toppinen, Anne & Näyhä, Annukka, 2022. "Exploring the unknowns – State of the art in qualitative forest-based sector foresight research," Forest Policy and Economics, Elsevier, vol. 135(C).
    20. Vringer, Kees & Carabain, Christine L., 2020. "Measuring the legitimacy of energy transition policy in the Netherlands," Energy Policy, Elsevier, vol. 138(C).

    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:eee:socmed:v:304:y:2022:i:c:s0277953620301490. 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: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    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.