IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v68y2009i8p1472-1480.html
   My bibliography  Save this article

Genetics on stage: Public engagement in health policy development on preimplantation genetic diagnosis

Author

Listed:
  • Cox, Susan M.
  • Kazubowski-Houston, Magdalena
  • Nisker, Jeff

Abstract

Arts-based approaches to public engagement offer unique advantages over traditional methods of consultation. Here we describe and assess our use of theatre as a method of public engagement in the development of health policy on preimplantation genetic diagnosis, a controversial method for selecting the genetic characteristics of embryos created through in vitro fertilization. Funding from the Canadian Institutes for Health Research and Health Canada supported 16 performances of the play Orchids in Vancouver, Toronto, and Montréal and post-performance discussion in English and French (with Hubert Doucet) in 2005. A total of 741 individuals attended. The methods used to assess audience engagement and elicit policy-relevant dialogue included in-theatre observation of audience responses, moderated post-performance large audience discussion and focus groups, audience feedback forms and researcher fieldnotes. Emphasizing process and context over emerging outcomes, we reflect on the distinctive contributions of theatre in stimulating public engagement and the need to utilize multiple methods to adequately assess these contributions. We suggest continued dialogue about the possible uses of theatre in health policy development and conclude that greater clarity is needed with regard to citizens' (as well as specific stakeholders, policy makers' and sponsors') desired outcomes if there is to be a suitably nuanced and reflexive basis for assessing the effectiveness of various strategies for public engagement.

Suggested Citation

  • Cox, Susan M. & Kazubowski-Houston, Magdalena & Nisker, Jeff, 2009. "Genetics on stage: Public engagement in health policy development on preimplantation genetic diagnosis," Social Science & Medicine, Elsevier, vol. 68(8), pages 1472-1480, April.
  • Handle: RePEc:eee:socmed:v:68:y:2009:i:8:p:1472-1480
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277-9536(09)00034-3
    Download Restriction: Full text for ScienceDirect subscribers only
    ---><---

    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. Nisker, Jeff & Martin, Douglas K. & Bluhm, Robyn & Daar, Abdallah S., 2006. "Theatre as a public engagement tool for health-policy development," Health Policy, Elsevier, vol. 78(2-3), pages 258-271, October.
    2. Abelson, Julia & Forest, Pierre-Gerlier & Eyles, John & Smith, Patricia & Martin, Elisabeth & Gauvin, Francois-Pierre, 2003. "Deliberations about deliberative methods: issues in the design and evaluation of public participation processes," Social Science & Medicine, Elsevier, vol. 57(2), pages 239-251, July.
    3. Davis, Kat Kleman & Davis, Jeffrey Sasha & Dowler, Lorraine, 2004. "In motion, out of place: the public space(s) of Tourette Syndrome," Social Science & Medicine, Elsevier, vol. 59(1), pages 103-112, July.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. W. Willems & A. Heltzel & J. Nabuurs & J. Broerse & F. Kupper, 2023. "Welcome to the fertility clinic of the future! Using speculative design to explore the moral landscape of reproductive technologies," Palgrave Communications, Palgrave Macmillan, vol. 10(1), pages 1-12, December.
    2. Nichols, Jennica & Cox, Susan M. & Cook, Christina & Lea, Graham W. & Belliveau, George, 2022. "Research-based Theatre about veterans transitioning home: A mixed-methods evaluation of audience impacts," Social Science & Medicine, Elsevier, vol. 292(C).
    3. Jennifer L. Lapum & Linda Liu & Kathryn Church & Terrence M. Yau & Perin Ruttonsha & Alison Matthews David & Bruk Retta, 2014. "Arts-Informed Research Dissemination in the Health Sciences," SAGE Open, , vol. 4(1), pages 21582440145, February.

    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. Markevich, Andrei & Harrison, Mark, 2011. "Great War, Civil War, and Recovery: Russia's National Income, 1913 to 1928," The Journal of Economic History, Cambridge University Press, vol. 71(3), pages 672-703, September.
    2. Blackstock, K.L. & Kelly, G.J. & Horsey, B.L., 2007. "Developing and applying a framework to evaluate participatory research for sustainability," Ecological Economics, Elsevier, vol. 60(4), pages 726-742, February.
    3. Clare Bayley & Simon French, 2008. "Designing a Participatory Process for Stakeholder Involvement in a Societal Decision," Group Decision and Negotiation, Springer, vol. 17(3), pages 195-210, May.
    4. Swaans, Kees & Broerse, Jacqueline & Meincke, Maylin & Mudhara, Maxwell & Bunders, Joske, 2009. "Promoting food security and well-being among poor and HIV/AIDS affected households: Lessons from an interactive and integrated approach," Evaluation and Program Planning, Elsevier, vol. 32(1), pages 31-42, February.
    5. Mauro Serapioni & Pedro Lopes Ferreira & Patrícia Antunes, 2014. "Participação em Saúde: Conceitos e Conteúdos," Notas Económicas, Faculty of Economics, University of Coimbra, issue 40, pages 26-42, December.
    6. Degeling, Chris & Rychetnik, Lucie & Street, Jackie & Thomas, Rae & Carter, Stacy M., 2017. "Influencing health policy through public deliberation: Lessons learned from two decades of Citizens'/community juries," Social Science & Medicine, Elsevier, vol. 179(C), pages 166-171.
    7. Thurston, Wilfreda E. & MacKean, Gail & Vollman, Ardene & Casebeer, Ann & Weber, Myron & Maloff, Bretta & Bader, Judy, 2005. "Public participation in regional health policy: a theoretical framework," Health Policy, Elsevier, vol. 73(3), pages 237-252, September.
    8. Deng, Chung-Yeh & Wu, Chia-Ling, 2010. "An innovative participatory method for newly democratic societies: The "civic groups forum" on national health insurance reform in Taiwan," Social Science & Medicine, Elsevier, vol. 70(6), pages 896-903, March.
    9. Sattler, Claudia & Loft, Lasse & Mann, Carsten & Meyer, Claas, 2018. "Methods in ecosystem services governance analysis: An introduction," Ecosystem Services, Elsevier, vol. 34(PB), pages 155-168.
    10. Yunita, Sekar A.W. & Soraya, Emma & Maryudi, Ahmad, 2018. "“We are just cheerleaders”: Youth's views on their participation in international forest-related decision-making fora," Forest Policy and Economics, Elsevier, vol. 88(C), pages 52-58.
    11. Steffensen, Mette B. & Matzen, Christina L. & Wadmann, Sarah, 2022. "Patient participation in priority setting: Co-existing participant roles," Social Science & Medicine, Elsevier, vol. 294(C).
    12. Lopes, Edilene & Carter, Drew & Street, Jackie, 2015. "Power relations and contrasting conceptions of evidence in patient-involvement processes used to inform health funding decisions in Australia," Social Science & Medicine, Elsevier, vol. 135(C), pages 84-91.
    13. Susumu Ohnuma & Miki Yokoyama & Shogo Mizutori, 2022. "Procedural Fairness and Expected Outcome Evaluations in the Public Acceptance of Sustainability Policymaking: A Case Study of Multiple Stepwise Participatory Programs to Develop an Environmental Maste," Sustainability, MDPI, vol. 14(6), pages 1-22, March.
    14. Torres, Miguel Matos & Clegg, L. Jeremy & Varum, Celeste Amorim, 2016. "The missing link between awareness and use in the uptake of pro-internationalization incentives," International Business Review, Elsevier, vol. 25(2), pages 495-510.
    15. Degeling, Chris & Carter, Stacy M. & Rychetnik, Lucie, 2015. "Which public and why deliberate? – A scoping review of public deliberation in public health and health policy research," Social Science & Medicine, Elsevier, vol. 131(C), pages 114-121.
    16. Martin Thomas Falk & Eva Hagsten, 2021. "When international academic conferences go virtual," Scientometrics, Springer;Akadémiai Kiadó, vol. 126(1), pages 707-724, January.
    17. Rojatz, Daniela & Forster, Rudolf, 2017. "Self-help organisations as patient representatives in health care and policy decision-making," Health Policy, Elsevier, vol. 121(10), pages 1047-1052.
    18. Robinson, Suzanne & Williams, Iestyn & Dickinson, Helen & Freeman, Tim & Rumbold, Benedict, 2012. "Priority-setting and rationing in healthcare: Evidence from the English experience," Social Science & Medicine, Elsevier, vol. 75(12), pages 2386-2393.
    19. Fontana, Lorenza B. & Grugel, Jean, 2016. "The Politics of Indigenous Participation Through “Free Prior Informed Consent”: Reflections from the Bolivian Case," World Development, Elsevier, vol. 77(C), pages 249-261.
    20. Malcolm Anderson & Jeff Richardson & John McKie & Angelo Iezzi & Munir Khan, 2011. "The Relevance of Personal Characteristics in Health Care Rationing: What the Australian Public Thinks and Why," American Journal of Economics and Sociology, Wiley Blackwell, vol. 70(1), pages 131-151, January.

    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:68:y:2009:i:8:p:1472-1480. 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.