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Renegotiation, uncertainty, imagination: Assemblage perspectives on reproductive and family planning with an Inborn Error of immunity

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  • Davidson, Hannah R.
  • Jamal, Leila
  • Mueller, Rebecca
  • Similuk, Morgan
  • Owczarzak, Jill

Abstract

Advances within the new genetics expand our understanding of the scope and presentation of inherited conditions, particularly to include incompletely penetrant and variably expressive conditions. These features can complicate patients’ reproductive and family planning processes, in part because they expand the possibilities of life with an inherited condition. Despite many inquiries into reproductive planning with an inherited condition, accounts of experiential knowledge and reproductive planning fail to adequately describe the uncertainties experienced by people living with incompletely penetrant and variably expressive conditions. To address this gap, we conducted a qualitative, cross-sectional study using assemblage theory to characterize the impacts of experiential knowledge on reproductive planning for individuals living with Inborn Errors of Immunity (IEI) that exhibit incomplete penetrance and variable expressivity.

Suggested Citation

  • Davidson, Hannah R. & Jamal, Leila & Mueller, Rebecca & Similuk, Morgan & Owczarzak, Jill, 2024. "Renegotiation, uncertainty, imagination: Assemblage perspectives on reproductive and family planning with an Inborn Error of immunity," Social Science & Medicine, Elsevier, vol. 360(C).
    • Handle: RePEc:eee:socmed:v:360:y:2024:i:c:s0277953624007573
    DOI: 10.1016/j.socscimed.2024.117303
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    References listed on IDEAS

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    1. Boardman, Felicity K., 2017. "Experience as knowledge: Disability, distillation and (reprogenetic) decision-making," Social Science & Medicine, Elsevier, vol. 191(C), pages 186-193.
    2. Hans‐Peter Kohler & Francesco C. Billari & José Antonio Ortega, 2002. "The Emergence of Lowest‐Low Fertility in Europe During the 1990s," Population and Development Review, The Population Council, Inc., vol. 28(4), pages 641-680, December.
    3. Finkler, Kaja & Skrzynia, Cécile & Evans, James P., 2003. "The new genetics and its consequences for family, kinship, medicine and medical genetics," Social Science & Medicine, Elsevier, vol. 57(3), pages 403-412, August.
    4. Boardman, Felicity Kate, 2014. "The expressivist objection to prenatal testing: The experiences of families living with genetic disease," Social Science & Medicine, Elsevier, vol. 107(C), pages 18-25.
    5. Neely, Eva, 2023. "Theorising mother-baby-assemblages: The vital emergence of maternal health," Social Science & Medicine, Elsevier, vol. 317(C).
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