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January 26, 2026PLOS Global Public HealthOpen Access

Patient, parent and provider perspectives on sickle cell disease genetics research in Jamaica

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Authors

KJKrystin JonesKSKearsley A. StewartMAMonika Asnani

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Overview

Qualitative study investigates perspectives on genetics research in sickle cell disease, highlighting implications for LMICs.

Key Points

  • This study examines the views of patients, parents, and providers regarding genetics research in sickle cell disease.
  • Qualitative study using semi-structured in-depth interviews.
  • Participants included 10 healthcare providers, 10 individuals with sickle cell disease, and 9 parents.
  • Interviews were conducted in Kingston, Jamaica to gather context-specific insights.
  • Most participants expressed support for genetics research, believing it could improve treatment options.
  • Some participants conflated research participation with receiving treatment or health screenings.
  • Concerns about privacy, mistrust, and misconceptions emerged among a minority of participants.

Cite This Study

Jones et al. (2026) studied this question.

synapsesocial.com/papers/697703f6722626c4468e8fe3https://doi.org/10.1371/journal.pgph.0005789
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1Genomic Knowledge and Mistrust Among Families with Sickle Cell Disease2024
  2. 2Perceptions and preferences for genetic testing for sickle cell disease or trait: a qualitative study in Cameroon, Ghana and Tanzania2024 · 7 citations
  3. 3Genetics and Genomics in Sickle Cell Disease in Africa2026 · 2 citations
  4. 4I know that one day I will be cured, and all will be well: Perspectives on acceptability of curative therapies for sickle cell disease in Tanzania.2025 · 1 citations
  5. 5Combining deliberative engagement with qualitative research to assess patient and caregiver perspectives on curative therapies for sickle cell disease in Africa2025