IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v298y2022ics0277953622001630.html
   My bibliography  Save this article

Genetic testing and family entanglements

Author

Listed:
  • Dimond, Rebecca
  • Doheny, Shane
  • Ballard, Lisa
  • Clarke, Angus

Abstract

The development of the ‘new genetics’ in the early 1990's opened up a new space which required some patients and families to understand and navigate genetic testing. The social science literature that has grown alongside the ‘new genetics’, now spanning more than thirty years, has continued to explore and question assumptions about attitudes and responses towards genetic technologies. In this article we highlight how individual experience of genetic disease and personal responses towards genetic technologies can only be understood by considering their context. We focus on the rich literature on family within sociology, science and technology studies, anthropology, and family studies, to explore the myriad ways in which family is implicated in the patient experience of genetic testing. We explore these connections by drawing on a set of interviews held with individuals who have undergone a predictive test for a genetic condition, including Huntington's Disease and breast cancer. Five themes were developed: family disclosure, family gatekeeping, going for testing, individual and collective communication practices, and receiving a negative test result. To conclude, we highlight how these connections might be considered through the lens of entanglement, explaining the complex mechanisms through which family and genetics are intimately entwined.

Suggested Citation

  • Dimond, Rebecca & Doheny, Shane & Ballard, Lisa & Clarke, Angus, 2022. "Genetic testing and family entanglements," Social Science & Medicine, Elsevier, vol. 298(C).
    • Handle: RePEc:eee:socmed:v:298:y:2022:i:c:s0277953622001630
    DOI: 10.1016/j.socscimed.2022.114857
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277953622001630
    Download Restriction: Full text for ScienceDirect subscribers only
    File URL: https://libkey.io/10.1016/j.socscimed.2022.114857?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. Geelen, Els & Van Hoyweghen, Ine & Horstman, Klasien, 2011. "Making genetics not so important: Family work in dealing with familial hypertrophic cardiomyopathy," Social Science & Medicine, Elsevier, vol. 72(11), pages 1752-1759, June.
    2. 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.
    3. Nunes, João Arriscado & Ferreira, Patrícia & Queirós, Filipa, 2014. "Taking part: Engaging knowledge on health in clinical encounters," Social Science & Medicine, Elsevier, vol. 123(C), pages 194-201.
    4. McDougall, A. & Goldszmidt, M. & Kinsella, E.A. & Smith, S. & Lingard, L., 2016. "Collaboration and entanglement: An actor-network theory analysis of team-based intraprofessional care for patients with advanced heart failure," Social Science & Medicine, Elsevier, vol. 164(C), pages 108-117.
    5. Rabeharisoa, Vololona, 2006. "From representation to mediation: The shaping of collective mobilization on muscular dystrophy in France," Social Science & Medicine, Elsevier, vol. 62(3), pages 564-576, February.
    6. Mwale, Shadreck, 2020. "‘Becoming-with’ a repeat healthy volunteer: Managing and negotiating trust among repeat healthy volunteers in commercial clinical drug trials," Social Science & Medicine, Elsevier, vol. 245(C).
    7. Weiner, Kate, 2011. "Exploring genetic responsibility for the self, family and kin in the case of hereditary raised cholesterol," Social Science & Medicine, Elsevier, vol. 72(11), pages 1760-1767, June.
    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. Reiss, Michael & Greene, Carolyn A. & Ford, Julian D., 2017. "Is it time to talk? Understanding specialty child mental healthcare providers' decisions to engage in interdisciplinary communication with pediatricians," Social Science & Medicine, Elsevier, vol. 175(C), pages 66-71.
    2. Baggott, Rob & Jones, Kathryn, 2014. "The voluntary sector and health policy: The role of national level health consumer and patients' organisations in the UK," Social Science & Medicine, Elsevier, vol. 123(C), pages 202-209.
    3. Pinar, Candas & Almeling, Rene & Gadarian, Shana Kushner, 2018. "Does genetic risk for common adult diseases influence reproductive plans? Evidence from a national survey experiment in the United States," Social Science & Medicine, Elsevier, vol. 218(C), pages 62-68.
    4. Buchbinder, Mara & Timmermans, Stefan, 2011. "Newborn screening and maternal diagnosis: Rethinking family benefit," Social Science & Medicine, Elsevier, vol. 73(7), pages 1014-1018.
    5. Gregory, Hollin, 2020. "Making a murderer: Media renderings of brain injury and Aaron Hernandez as a medical and sporting subject," Social Science & Medicine, Elsevier, vol. 244(C).
    6. Derbez, Benjamin, 2018. "Is there a “right time” for bad news? Kairos in familial communication on hereditary breast and ovarian cancer risk," Social Science & Medicine, Elsevier, vol. 202(C), pages 13-19.
    7. 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.
    8. Haw, Jennie & Cunningham, Shannon & O'Doherty, Kieran C., 2018. "Epistemic tensions between people living with asthma and healthcare professionals in clinical encounters," Social Science & Medicine, Elsevier, vol. 208(C), pages 34-40.
    9. Veltkamp, Gerlieke & Karasaki, Mutsumi & Bröer, Christian, 2020. "Family health competence: Attachment, detachment and health practices in the early years of parenthood," Social Science & Medicine, Elsevier, vol. 266(C).
    10. Amandine Gautier & Sébastien Gardon & Christophe Déprés, 2023. "The emergence of the Biodiversity/Health nexus: making biodiversity a health issue," Review of Agricultural, Food and Environmental Studies, Springer, vol. 104(1), pages 27-46, March.
    11. Tian, Xiaoli & Zhang, Sai, 2022. "Expert or experiential knowledge? How knowledge informs situated action in childcare practices," Social Science & Medicine, Elsevier, vol. 307(C).
    12. Fillion, Emmanuelle, 2008. "Clinical relationships tested by iatrogenicity: The case of haemophiliac patients faced with the epidemic of transfusional AIDS," Social Science & Medicine, Elsevier, vol. 67(9), pages 1400-1409, November.
    13. Epstein, Steven, 2016. "The politics of health mobilization in the United States: The promise and pitfalls of “disease constituencies”," Social Science & Medicine, Elsevier, vol. 165(C), pages 246-254.
    14. Claire Edwards & Etaoine Howlett & Madeleine Akrich & Vololona Rabeharisoa, 2012. "Attention deficit hyperactivity disorder in France and Ireland: parents' groups' scientific and political framing of an unsettled condition," CSI Working Papers Series 024, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    15. Clarke, Angus & Sarangi, Srikant & Verrier-Jones, Kate, 2011. "Voicing the lifeworld: Parental accounts of responsibility in genetic consultations for polycystic kidney disease," Social Science & Medicine, Elsevier, vol. 72(11), pages 1743-1751, June.
    16. Vololona Rabeharisoa, 2013. "Evidence-based activism: Patients’ organisations, users’ and activist’s groups in knowledge society," CSI Working Papers Series 033, Centre de Sociologie de l'Innovation (CSI), Mines ParisTech.
    17. Moreira, Tiago, 2006. "Sleep, health and the dynamics of biomedicine," Social Science & Medicine, Elsevier, vol. 63(1), pages 54-63, July.
    18. Sudbury-Riley, Lynn & Hunter-Jones, Philippa, 2021. "Facilitating inter-professional integration in palliative care: A service ecosystem perspective," Social Science & Medicine, Elsevier, vol. 277(C).
    19. Dimond, Rebecca & Bartlett, Andrew & Lewis, Jamie, 2015. "What binds biosociality? The collective effervescence of the parent-led conference," Social Science & Medicine, Elsevier, vol. 126(C), pages 1-8.
    20. Marion, Élodie & Mann-Feder, Varda, 2020. "Supporting the educational attainment of youth in residential care: From issues to controversies," Children and Youth Services Review, Elsevier, vol. 113(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:298:y:2022:i:c:s0277953622001630. 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.