IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v62y2006i4p998-1008.html
   My bibliography  Save this article

Volunteer human subjects' understandings of their participation in a biomedical research experiment

Author

Listed:
  • Morris, Norma
  • Bàlmer, Brian

Abstract

The paper focuses on how volunteer human subjects in research understand their own participation in experimentation. We ask how they view their own role, the experimental setting, and how they articulate their understanding of the researcher-subject relationship. The empirical basis of the study is participant-observation and qualitative semi-structures interviews with volunteers in an experimental setting far removed from the more commonly studied randomised control trial (RCT), namely, the early stage testing of a prototype instrument for breast imaging. Analysis of this empirical data leads us to conclude that research subjects do not conform solely to one or other of the models of the researcher-subject relationship suggested in the literature. Rather, the interaction needs to be considered as a social situation which volunteer subjects actively negotiate in real time. They move through multiple roles and identities as part of the navigation through unfamiliar social territory, in order to establish a relationship in which they can feel socially comfortable and appropriately valued.

Suggested Citation

  • Morris, Norma & Bàlmer, Brian, 2006. "Volunteer human subjects' understandings of their participation in a biomedical research experiment," Social Science & Medicine, Elsevier, vol. 62(4), pages 998-1008, February.
  • Handle: RePEc:eee:socmed:v:62:y:2006:i:4:p:998-1008
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277-9536(05)00359-X
    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. Snowdon, Claire & Garcia, Jo & Elbourne, Diana, 1997. "Making sense of randomization; responses of parents of critically ill babies to random allocation of treatment in a clinical trial," Social Science & Medicine, Elsevier, vol. 45(9), pages 1337-1355, November.
    2. Lidz, Charles W. & Appelbaum, Paul S. & Grisso, Thomas & Renaud, Michelle, 2004. "Therapeutic misconception and the appreciation of risks in clinical trials," Social Science & Medicine, Elsevier, vol. 58(9), pages 1689-1697, May.
    3. Featherstone, Katie & Donovan, Jenny L., 2002. ""Why don't they just tell me straight, why allocate it?" The struggle to make sense of participating in a randomised controlled trial," Social Science & Medicine, Elsevier, vol. 55(5), pages 709-719, September.
    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. Mein, Gill & Seale, Clive & Rice, Helen & Johal, Suneeta & Ashcroft, Richard E. & Ellison, George & Tinker, Anthea, 2012. "Altruism and participation in longitudinal health research? Insights from the Whitehall II Study," Social Science & Medicine, Elsevier, vol. 75(12), pages 2345-2352.
    2. Elberse, Janneke Elisabeth & Pittens, Carina Anna Cornelia Maria & de Cock Buning, Tjard & Broerse, Jacqueline Elisabeth Willy, 2012. "Patient involvement in a scientific advisory process: Setting the research agenda for medical products," Health Policy, Elsevier, vol. 107(2), pages 231-242.
    3. Fisher, Jill A., 2008. "Practicing research ethics: Private-sector physicians & pharmaceutical clinical trials," Social Science & Medicine, Elsevier, vol. 66(12), pages 2495-2505, June.
    4. Fisher, Jill A. & Cottingham, Marci D. & Kalbaugh, Corey A., 2015. "Peering into the pharmaceutical “pipeline”: Investigational drugs, clinical trials, and industry priorities," Social Science & Medicine, Elsevier, vol. 131(C), pages 322-330.
    5. Murphy, Elizabeth & Dingwall, Robert, 2007. "Informed consent, anticipatory regulation and ethnographic practice," Social Science & Medicine, Elsevier, vol. 65(11), pages 2223-2234, December.
    6. Dixon-Woods, Mary & Ashcroft, Richard E. & Jackson, Clare J. & Tobin, Martin D. & Kivits, Joelle & Burton, Paul R. & Samani, Nilesh J., 2007. "Beyond "misunderstanding": Written information and decisions about taking part in a genetic epidemiology study," Social Science & Medicine, Elsevier, vol. 65(11), pages 2212-2222, December.
    7. Cox, Susan M. & McDonald, Michael, 2013. "Ethics is for human subjects too: Participant perspectives on responsibility in health research," Social Science & Medicine, Elsevier, vol. 98(C), pages 224-231.

    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. Dixon-Woods, Mary & Ashcroft, Richard E. & Jackson, Clare J. & Tobin, Martin D. & Kivits, Joelle & Burton, Paul R. & Samani, Nilesh J., 2007. "Beyond "misunderstanding": Written information and decisions about taking part in a genetic epidemiology study," Social Science & Medicine, Elsevier, vol. 65(11), pages 2212-2222, December.
    2. Hallowell, Nina & Cooke, Sarah & Crawford, Gill & Lucassen, Anneke & Parker, Michael, 2009. "Distinguishing research from clinical care in cancer genetics: Theoretical justifications and practical strategies," Social Science & Medicine, Elsevier, vol. 68(11), pages 2010-2017, June.
    3. Lawton, Julia & Jenkins, Nicholas & Darbyshire, Julie & Farmer, Andrew & Holman, Rury & Hallowell, Nina, 2012. "Understanding the outcomes of multi-centre clinical trials: A qualitative study of health professional experiences and views," Social Science & Medicine, Elsevier, vol. 74(4), pages 574-581.
    4. Sarradon-Eck, Aline & Sakoyan, Juliette & Desclaux, Alice & Mancini, Julien & Genre, Dominique & Julian-Reynier, Claire, 2012. ""They should take time": Disclosure of clinical trial results as part of a social relationship," Social Science & Medicine, Elsevier, vol. 75(5), pages 873-882.
    5. Snowdon, Claire & Elbourne, Diana & Garcia, Jo, 2006. ""It was a snap decision": Parental and professional perspectives on the speed of decisions about participation in perinatal randomised controlled trials," Social Science & Medicine, Elsevier, vol. 62(9), pages 2279-2290, May.
    6. Scott, Clare & Walker, Jan & White, Peter & Lewith, George, 2011. "Forging convictions: The effects of active participation in a clinical trial," Social Science & Medicine, Elsevier, vol. 72(12), pages 2041-2048, June.
    7. Wolters, Anna & de Wert, Guido & van Schayck, Onno & Horstman, Klasien, 2014. "Constructing a trial as a personal lifestyle change project: Participants' experiences in a clinical study for nicotine vaccination," Social Science & Medicine, Elsevier, vol. 104(C), pages 116-123.
    8. Phelps, Emma Elizabeth & Tutton, Elizabeth & Griffin, Xavier & Baird, Janis, 2020. "A mixed-methods systematic review of patients' experience of being invited to participate in surgical randomised controlled trials," Social Science & Medicine, Elsevier, vol. 253(C).
    9. Zvonareva, Olga & Engel, Nora & Martsevich, Sergey & de Wert, Guido & Horstman, Klasien, 2015. "International clinical trials, cardiovascular disease and treatment options in the Russian Federation: Research and treatment in practice," Social Science & Medicine, Elsevier, vol. 128(C), pages 255-262.
    10. Lawrence, David S. & Ssali, Agnes & Moshashane, Neo & Nabaggala, Georgina & Maphane, Lebogang & Harrison, Thomas S. & Meya, David B. & Jarvis, Joseph N. & Seeley, Janet, 2022. "Decision making in a clinical trial for a life-threatening illness: Therapeutic expectation, not misconception," Social Science & Medicine, Elsevier, vol. 305(C).
    11. Fisher, Jill A., 2008. "Practicing research ethics: Private-sector physicians & pharmaceutical clinical trials," Social Science & Medicine, Elsevier, vol. 66(12), pages 2495-2505, June.
    12. Wade, Julia & Donovan, Jenny L. & Athene Lane, J. & Neal, David E. & Hamdy, Freddie C., 2009. "It's not just what you say, it's also how you say it: Opening the 'black box' of informed consent appointments in randomised controlled trials," Social Science & Medicine, Elsevier, vol. 68(11), pages 2018-2028, June.
    13. Abhyankar, Purva & Velikova, Galina & Summers, Barbara & Bekker, Hilary L., 2016. "Identifying components in consent information needed to support informed decision making about trial participation: An interview study with women managing cancer," Social Science & Medicine, Elsevier, vol. 161(C), pages 83-91.
    14. Dawson, Liza & Kass, Nancy E., 2005. "Views of US researchers about informed consent in international collaborative research," Social Science & Medicine, Elsevier, vol. 61(6), pages 1211-1222, September.
    15. Lowton, Karen, 2005. "Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis," Social Science & Medicine, Elsevier, vol. 61(8), pages 1854-1865, October.

    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:62:y:2006:i:4:p:998-1008. 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.