IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v276y2021ics0277953621001672.html
   My bibliography  Save this article

“Why didn't we do it”? Reproductive loss and the problem of post-mortem consent

Author

Listed:
  • Reed, Kate
  • Ferazzoli, Maria Teresa
  • Whitby, Elspeth

Abstract

Informed consent has been a much debated topic within the social sciences. It often forms a central feature of discussions on research in medical settings and in social research methods more broadly. While sympathetic to its’ underlying principles of autonomy and choice, social scientists have tended to argue that these are seldom enacted in research or clinical practice. Rather, such principles are often circumscribed by wider social structures and by a culture of medical dominance. Drawing on data from a qualitative study on perinatal post-mortem, this paper explores informed consent in the emotionally charged clinical arena of perinatal pathology. Our in-depth analysis will provide fresh insight into post-mortem decision-making in the sensitive arena of baby loss. Our findings show how parents often found it difficult to give consent for post-mortem, and also for professionals to take consent from parents. It was also not uncommon for parents to experience regret over non-consent later on. One of our key findings, however, related to the sense of emotional and diagnostic closure often afforded by post-mortem when consent had been given. We conclude by arguing that, although we cannot resolve the tension between the principles of consent and their enactment in practice, we can develop a reflexive approach with which to navigate the process. In doing so, the paper contributes to wider sociological discussions on the meaning and use of informed consent in various settings beyond medical contexts.

Suggested Citation

  • Reed, Kate & Ferazzoli, Maria Teresa & Whitby, Elspeth, 2021. "“Why didn't we do it”? Reproductive loss and the problem of post-mortem consent," Social Science & Medicine, Elsevier, vol. 276(C).
  • Handle: RePEc:eee:socmed:v:276:y:2021:i:c:s0277953621001672
    DOI: 10.1016/j.socscimed.2021.113835
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953621001672
    Download Restriction: Full text for ScienceDirect subscribers only

    File URL: https://libkey.io/10.1016/j.socscimed.2021.113835?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. Miller, Tina & Boulton, Mary, 2007. "Changing constructions of informed consent: Qualitative research and complex social worlds," Social Science & Medicine, Elsevier, vol. 65(11), pages 2199-2211, December.
    2. Dixon-Woods, Mary & Williams, Simon J. & Jackson, Clare J. & Akkad, Andrea & Kenyon, Sara & Habiba, Marwan, 2006. "Why do women consent to surgery, even when they do not want to? An interactionist and Bourdieusian analysis," Social Science & Medicine, Elsevier, vol. 62(11), pages 2742-2753, June.
    3. Ross Coomber, 2002. "Signing your life away?: Why Research Ethics Committees (REC) shouldn't always require written confirmation that participants in research have been informed of the aims of a study and their rights - t," Sociological Research Online, , vol. 7(1), pages 218-221, March.
    4. Rose Wiles & Graham Crow & Vikki Charles & Sue Heath, 2007. "Informed Consent and the Research Process: Following Rules or Striking Balances?," Sociological Research Online, , vol. 12(2), pages 99-110, March.
    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. Liz Stanley & Sue Wise, 2010. "The ESRC's 2010 Framework for Research Ethics: Fit for Research Purpose?," Sociological Research Online, , vol. 15(4), pages 106-115, November.
    2. Kate Reed, 2007. "Bureaucracy and Beyond: The Impact of Ethics and Governance Procedures on Health Research in the Social Sciences," Sociological Research Online, , vol. 12(5), pages 80-84, September.
    3. Querubin S. Yap & Jon K. Webber, 2015. "Developing Corporate Culture In A Training Department: A Qualitative Case Study Of Internal And Outsourced Staff," Review of Business and Finance Studies, The Institute for Business and Finance Research, vol. 6(1), pages 43-56.
    4. John S. McKenzie, 2009. "‘You Don't Know How Lucky you are to be Here!’: Reflections on Covert Practices in an Overt Participant Observation Study," Sociological Research Online, , vol. 14(2), pages 60-69, March.
    5. Baji, Petra & Rubashkin, Nicholas & Szebik, Imre & Stoll, Kathrin & Vedam, Saraswathi, 2017. "Informal cash payments for birth in Hungary: Are women paying to secure a known provider, respect, or quality of care?," Social Science & Medicine, Elsevier, vol. 189(C), pages 86-95.
    6. Hélder Raposo & Sara Melo & Catarina Egreja, 2022. "Data Protection in Sociological Health Research: A Critical Narrative about the Challenges of a New Regulatory Landscape," Sociological Research Online, , vol. 27(4), pages 1060-1076, December.
    7. Putniņa, Aivita, 2013. "Bioethics and power: Informed consent procedures in post-socialist Latvia," Social Science & Medicine, Elsevier, vol. 98(C), pages 340-344.
    8. Karl-Axel Lindgren & Tim Lang, 2022. "Understanding the policy discourse within the formulation of the 2013 Indian National Food Security Act," Food Security: The Science, Sociology and Economics of Food Production and Access to Food, Springer;The International Society for Plant Pathology, vol. 14(5), pages 1159-1173, October.
    9. Rose Wiles & Graham Crow & Vikki Charles & Sue Heath, 2007. "Informed Consent and the Research Process: Following Rules or Striking Balances?," Sociological Research Online, , vol. 12(2), pages 99-110, March.
    10. Altman, Molly R. & Oseguera, Talita & McLemore, Monica R. & Kantrowitz-Gordon, Ira & Franck, Linda S. & Lyndon, Audrey, 2019. "Information and power: Women of color's experiences interacting with health care providers in pregnancy and birth," Social Science & Medicine, Elsevier, vol. 238(C), pages 1-1.
    11. Kate Reed, 2010. "The Spectre of Research Ethics and Governance and the ESRC's 2010 FRE: Nowhere Left to Hide?," Sociological Research Online, , vol. 15(4), pages 120-122, November.
    12. shuster, stef m., 2019. "Performing informed consent in transgender medicine," Social Science & Medicine, Elsevier, vol. 226(C), pages 190-197.
    13. Chiumento, Anna & Rahman, Atif & Frith, Lucy, 2020. "Writing to template: Researchers’ negotiation of procedural research ethics," Social Science & Medicine, Elsevier, vol. 255(C).
    14. MacIntosh, Robert & Beech, Nic & Martin, Graeme, 2012. "Dialogues and dialetics: Limits to clinician–manager interaction in healthcare organizations," Social Science & Medicine, Elsevier, vol. 74(3), pages 332-339.
    15. Smith, Sian K. & Dixon, Ann & Trevena, Lyndal & Nutbeam, Don & McCaffery, Kirsten J., 2009. "Exploring patient involvement in healthcare decision making across different education and functional health literacy groups," Social Science & Medicine, Elsevier, vol. 69(12), pages 1805-1812, December.
    16. Hayley Davies, 2008. "Reflexivity in Research Practice: Informed Consent with Children at School and at Home," Sociological Research Online, , vol. 13(4), pages 17-30, July.
    17. Margaret Melrose, 2011. "Regulating Social Research: Exploring the Implications of Extending Ethical Review Procedures in Social Research," Sociological Research Online, , vol. 16(2), pages 49-58, June.
    18. Brian Pickering, 2021. "Trust, but Verify: Informed Consent, AI Technologies, and Public Health Emergencies," Future Internet, MDPI, vol. 13(5), pages 1-20, May.
    19. Olga Kolotouchkina & Monica Viñarás-Abad & Luis Mañas-Viniegra, 2023. "Digital Ageism: Emerging Challenges and Best Practices of Age-Friendly Digital Urban Governance," Media and Communication, Cogitatio Press, vol. 11(3), pages 6-17.
    20. Carole Truman, 2003. "Ethics and the Ruling Relations of Research Production," Sociological Research Online, , vol. 8(1), pages 70-80, February.

    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:276:y:2021:i:c:s0277953621001672. 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.