title: Family and community concerns about post-mortem needle biopsies in a Muslim society.
abstract: BACKGROUND
  Post-mortem needle biopsies have been used in resource-poor settings to determine cause of death and there is interest in using them in Bangladesh. However, we did not know how families and communities would perceive this procedure or how they would decide whether or not to consent to a post-mortem needle biopsy. The goal of this study was to better understand family and community concerns and decision-making about post-mortem needle biopsies in this low-income, predominantly Muslim country in order to design an informed consent process.
  
  
  METHODS
  We conducted 16 group discussions with family members of persons who died during an outbreak of Nipah virus illness during 2004-2008 and 11 key informant interviews with their community and religious leaders. Qualitative researchers first described the post-mortem needle biopsy procedure and asked participants whether they would have agreed to this procedure during the outbreak. Researchers probed participants about the circumstances under which the procedure would be acceptable, if any, their concerns about the procedure, and how they would decide whether or not to consent to the procedure.
  
  
  RESULTS
  Overall, most participants agreed that post-mortem needle biopsies would be acceptable in some situations, particularly if they benefitted society. This procedure was deemed more acceptable than full autopsy because it would not require major delays in burial or remove organs, and did not require cutting or stitching of the body. It could be performed before the ritual bathing of the body in either the community or hospital setting. However, before consent would be granted for such a procedure, the research team must gain the trust of the family and community which could be difficult. Although consent may only be provided by the guardians of the body, decisions about consent for the procedure would involve extended family and community and religious leaders.
  
  
  CONCLUSIONS
  The possible acceptability of this procedure during outbreaks represents an important opportunity to better characterize cause of death in Bangladesh which could lead to improved public health interventions to prevent these deaths. Obstacles for research teams will include engaging all major stakeholders in decision-making and quickly building a trusting relationship with the family and community, which will be difficult given the short window of time prior to the ritual bathing of the body.
authors.affiliation: GPO 128, International Centre for Diarrheal Diseases Research, Bangladesh, Mohakhali, Dhaka 1000, Bangladesh. egurley@icddrb.org
authors.forename: Emily S
authors.initials: ES
authors.lastname: Gurley
authors.forename: Shahana
authors.initials: S
authors.lastname: Parveen
authors.forename: M Saiful
authors.initials: MS
authors.lastname: Islam
authors.forename: M Jahangir
authors.initials: MJ
authors.lastname: Hossain
authors.forename: Nazmun
authors.initials: N
authors.lastname: Nahar
authors.forename: Nusrat
authors.initials: N
authors.lastname: Homaira
authors.forename: Rebeca
authors.initials: R
authors.lastname: Sultana
authors.forename: James J
authors.initials: JJ
authors.lastname: Sejvar
authors.forename: Mahmudur
authors.initials: M
authors.lastname: Rahman
authors.forename: Stephen P
authors.initials: SP
authors.lastname: Luby
mesh_terms: D000293:Adolescent; D000328:Adult; D001344:Autopsy; D001459:Bangladesh; D001707:Biopsy, Needle / Q000941:ethics*; D002423:Cause of Death; D002648:Child; D002675:Child, Preschool; D003466:Cultural Characteristics; D003657:Decision Making / Q000941:ethics; D004196:Disease Outbreaks; D005190:Family; D005240:Feasibility Studies; D005260:Female; D045464:Henipavirus Infections / Q000453:epidemiology* / Q000401:mortality / Q000821:virology; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D007514:Islam; D008297:Male; D008875:Middle Aged; D045405:Nipah Virus; D011634:Public Health; D036301:Qualitative Research; D012068:Religion and Medicine; D035844:Researcher-Subject Relations / Q000941:ethics* / Q000523:psychology; D012111:Residence Characteristics; D035502:Trust