IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v228y2019icp103-110.html
   My bibliography  Save this article

Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan

Author

Listed:
  • Sheikh, Zainab Afshan
  • Jensen, Anja M.B.

Abstract

The Pakistani population has become particularly interesting for international genetic research due to its high rates of consanguinity. Based on 5 months fieldwork in Faisalabad among Pakistani genetic researchers from December 2015–January 2016 and February–April 2017 and interviews with 36 families and 14 researchers, this article focuses on research encounters. It demonstrates how genetic research figures in the lives of families affected by genetic medical conditions in light of their everyday struggles with disease, and considers their perspectives on destiny and hope. Through examining the potentials of the research encounter, we ask how research becomes meaningful in the lives of Pakistani families affected by genetic disease: how these families and individuals enable different modes of sharing tragic stories, contemplating hope and contesting logics of consanguinity. International genetic research depends on human raw material. If we wish to understand the precarious lives this research relies on, then the everyday struggles with disease, and the perspectives of families must be methodologically and theoretically engaged.

Suggested Citation

  • Sheikh, Zainab Afshan & Jensen, Anja M.B., 2019. "Channeling hope: An ethnographic study of how research encounters become meaningful for families suffering from genetic disease in Pakistan," Social Science & Medicine, Elsevier, vol. 228(C), pages 103-110.
    • Handle: RePEc:eee:socmed:v:228:y:2019:i:c:p:103-110
    DOI: 10.1016/j.socscimed.2019.03.024
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953619301662
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2019.03.024?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. Huniche, Lotte, 2011. "Moral landscapes and everyday life in families with Huntington's disease: Aligning ethnographic description and bioethics," Social Science & Medicine, Elsevier, vol. 72(11), pages 1810-1816, June.
    2. Geissler, P. Wenzel & Kelly, Ann & Imoukhuede, Babatunde & Pool, Robert, 2008. "'He is now like a brother, I can even give him some blood' - Relational ethics and material exchanges in a malaria vaccine 'trial community' in The Gambia," Social Science & Medicine, Elsevier, vol. 67(5), pages 696-707, September.
    3. Fairhead, James & Leach, Melissa & Small, Mary, 2006. "Where techno-science meets poverty: Medical research and the economy of blood in The Gambia, West Africa," Social Science & Medicine, Elsevier, vol. 63(4), pages 1109-1120, August.
    4. Eggerman, Mark & Panter-Brick, Catherine, 2010. "Suffering, hope, and entrapment: Resilience and cultural values in Afghanistan," Social Science & Medicine, Elsevier, vol. 71(1), pages 71-83, July.
    5. Arribas-Ayllon, Michael & Sarangi, Srikant & Clarke, Angus, 2008. "Managing self-responsibility through other-oriented blame: Family accounts of genetic testing," Social Science & Medicine, Elsevier, vol. 66(7), pages 1521-1532, April.
    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. Hutchinson, Eleanor & Nayiga, Susan & Nabirye, Christine & Taaka, Lilian & Staedke, Sarah G., 2018. "Data value and care value in the practice of health systems: A case study in Uganda," Social Science & Medicine, Elsevier, vol. 211(C), pages 123-130.
    2. Reynolds, Lindsey & Cousins, Thomas & Newell, Marie-Louise & Imrie, John, 2013. "The social dynamics of consent and refusal in HIV surveillance in rural South Africa," Social Science & Medicine, Elsevier, vol. 77(C), pages 118-125.
    3. Molyneux, Sassy & Geissler, P. Wenzel, 2008. "Ethics and the ethnography of medical research in Africa," Social Science & Medicine, Elsevier, vol. 67(5), pages 685-695, September.
    4. Gouda, H.N. & Kelly-Hanku, A. & Wilson, L. & Maraga, S. & Riley, I.D., 2016. "“Whenever they cry, I cry with them”: Reciprocal relationships and the role of ethics in a verbal autopsy study in Papua New Guinea," Social Science & Medicine, Elsevier, vol. 163(C), pages 1-9.
    5. Kelly, Ann H. & Ameh, David & Majambere, Silas & Lindsay, Steve & Pinder, Margaret, 2010. "'Like sugar and honey': The embedded ethics of a larval control project in The Gambia," Social Science & Medicine, Elsevier, vol. 70(12), pages 1912-1919, June.
    6. Sean B Nine & Abdul Fattah Najm & Emily B Allan & Petra C Gronholm, 2022. "Mental health stigma among community members in Afghanistan: A cross-sectional survey," International Journal of Social Psychiatry, , vol. 68(7), pages 1470-1485, November.
    7. Seguin, Maureen & Lewis, Ruth & Amirejibi, Tinatin & Razmadze, Mariam & Makhashvili, Nino & Roberts, Bayard, 2016. "Our flesh is here but our soul stayed there: A qualitative study on resource loss due to war and displacement among internally-displaced women in the Republic of Georgia," Social Science & Medicine, Elsevier, vol. 150(C), pages 239-247.
    8. Schrank, Beate & Bird, Victoria & Rudnick, Abraham & Slade, Mike, 2012. "Determinants, self-management strategies and interventions for hope in people with mental disorders: Systematic search and narrative review," Social Science & Medicine, Elsevier, vol. 74(4), pages 554-564.
    9. Tengbeh, Angus Fayia & Enria, Luisa & Smout, Elizabeth & Mooney, Thomas & Callaghan, Mike & Ishola, David & Leigh, Bailah & Watson-Jones, Deborah & Greenwood, Brian & Larson, Heidi & Lees, Shelley, 2018. "“We are the heroes because we are ready to die for this country”: Participants' decision-making and grounded ethics in an Ebola vaccine clinical trial," Social Science & Medicine, Elsevier, vol. 203(C), pages 35-42.
    10. Kingori, Patricia, 2013. "Experiencing everyday ethics in context: Frontline data collectors perspectives and practices of bioethics," Social Science & Medicine, Elsevier, vol. 98(C), pages 361-370.
    11. Panter-Brick, Catherine & Eggerman, Mark, 2018. "The field of medical anthropology in Social Science & Medicine," Social Science & Medicine, Elsevier, vol. 196(C), pages 233-239.
    12. Mendelsohn, Joshua B. & Rhodes, Tim & Spiegel, Paul & Schilperoord, Marian & Burton, John Wagacha & Balasundaram, Susheela & Wong, Chunting & Ross, David A., 2014. "Bounded agency in humanitarian settings: A qualitative study of adherence to antiretroviral therapy among refugees situated in Kenya and Malaysia," Social Science & Medicine, Elsevier, vol. 120(C), pages 387-395.
    13. Brisbois, Ben & Plamondon, Katrina, 2018. "The possible worlds of global health research: An ethics-focused discourse analysis," Social Science & Medicine, Elsevier, vol. 196(C), pages 142-149.
    14. Sanchez, Mari & Lamont, Michèle & Zilberstein, Shira, 2022. "How American college students understand social resilience and navigate towards the future during covid and the movement for racial justice," Social Science & Medicine, Elsevier, vol. 301(C).
    15. Polonsky, Michael Jay & Brijnath, Bianca & Renzaho, André M.N., 2011. ""They don't want our blood": Social inclusion and blood donation among African migrants in Australia," Social Science & Medicine, Elsevier, vol. 73(2), pages 336-342, July.
    16. Fehr, Alexandra & Muela, Joan & Nieto-Sanchez, Claudia & Manneh, Ebrima & Baldeh, Dullo & Ceesay, Omar & Bardají, Azucena & Zuiderent-Jerak, Teun & Bunders-Aelen, Joske, 2021. "The role of social cohesion in the implementation and coverage of a mass drug administration trial for malaria control in the Gambia: An in-depth comparison of two intervention villages," Social Science & Medicine, Elsevier, vol. 291(C).
    17. James, Myfanwy & Kasereka, Joseph Grace & Kasiwa, Benjamin & Kavunga-Membo, Hugo & Kambale, Kasonia & Grais, Rebecca & Muyembe-Tamfum, Jean-Jacques & Bausch, Daniel G. & Watson-Jones, Deborah & Lees, , 2023. "Protection, health seeking, or a laissez-passer: Participants’ decision-making in an EVD vaccine trial in the eastern Democratic Republic of the Congo," Social Science & Medicine, Elsevier, vol. 323(C).
    18. Lorway, Robert & Khan, Shamshad, 2014. "Reassembling epidemiology: Mapping, monitoring and making-up people in the context of HIV prevention in India," Social Science & Medicine, Elsevier, vol. 112(C), pages 51-62.
    19. Teerawichitchainan, Bussarawan & Korinek, Kim, 2012. "The long-term impact of war on health and wellbeing in Northern Vietnam: Some glimpses from a recent survey," Social Science & Medicine, Elsevier, vol. 74(12), pages 1995-2004.
    20. Koon, Adam D. & Mendenhall, Emily & Eich, Lori & Adams, Abby & Borus, Zach A., 2021. "A spectrum of (Dis)Belief: Coronavirus frames in a rural midwestern town in the United States," Social Science & Medicine, Elsevier, vol. 272(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:228:y:2019:i:c:p:103-110. 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.