A qualitative study on aspects of consent for genomic research in communities with low literacy.

BMC Medical Ethics
Daima Athumani BukiniJulie Makani

Abstract

Low literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants' comprehension for genomic studies. The purpose of this study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension. Using qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes. Findings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods ...Continue Reading

References

May 20, 2000·JAMA : the Journal of the American Medical Association·E J EmanuelC Grady
Feb 28, 2001·The New England Journal of Medicine·N LynöeL Ekström
Nov 5, 2002·Lancet·Daniel W FitzgeraldJean William Pape
Oct 8, 2004·EMBO Reports·Jacquelyn Ann K Kegley
Apr 26, 2007·PLoS Medicine·Dave A ChokshiOgobara K Doumbo
Sep 1, 2007·Journal of Nursing Scholarship : an Official Publication of Sigma Theta Tau International Honor Society of Nursing·Elizabeth Cohn, Elaine Larson
May 3, 2008·The Lancet Oncology·Michael Jefford, Rosemary Moore
May 19, 2010·Annual Review of Genomics and Human Genetics·Amy L McGuire, Laura M Beskow
Mar 2, 2012·Journal of Empirical Research on Human Research Ethics : JERHRE·Susan BullFasil Tekola Ayele
Oct 31, 2013·Journal of Empirical Research on Human Research Ethics : JERHRE·UNKNOWN Participants in the Community Engagement and Consent Workshop , Kilifi, Kenya , March 2011
Mar 19, 2014·Tropical Medicine & International Health : TM & IH·Muhammed O AfolabiDaniel Chandramohan
Nov 6, 2014·PloS One·Siana Nkya MtatiroJeffrey C Barrett
Dec 9, 2015·Journal of Medical Ethics·Nchangwi Syntia MunungJantina de Vries

❮ Previous
Next ❯

Related Concepts

Related Feeds

Anemia

Anemia develops when your blood lacks enough healthy red blood cells. Anemia of inflammation (AI, also called anemia of chronic disease) is a common, typically normocytic, normochromic anemia that is caused by an underlying inflammatory disease. Here is the latest research on anemia.

Blood And Marrow Transplantation

The use of hematopoietic stem cell transplantation or blood and marrow transplantation (bmt) is on the increase worldwide. BMT is used to replace damaged or destroyed bone marrow with healthy bone marrow stem cells. Here is the latest research on bone and marrow transplantation.