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

Author

Listed:
  • 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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