Response to Rennie: Is there a place for benevolent deception?

Abstract

We appreciate the thoughtful and cogent comment from Stuart Rennie on our article [1xEthical jurisdictions in biomedical research. Mfutso-Bengu, J.M. and Taylor, T.E. Trends Parasitol. 2002; 18: 231–234Abstract | Full Text | Full Text PDF | PubMed | Scopus (10)See all References][1]. The question raised on the ethics of selective (or partial) disclosure is one that is often discussed as the autopsy study in Malawi continues.We agree with Rennie in that in the absence of a convincing rationale for partial disclosure, the likelihood that full disclosure about removing the eyes during the autopsy would dissuade families from giving consent for the autopsy is not an acceptable justification for partial disclosure. Withholding relevant information solely to advance the research diminishes autonomy and would breach a fundamental principle of research ethics.A potential collision can be seen between the risk of undermining the principle of autonomy through less-than-full disclosure and the risk of violating the principle of beneficence by providing too much information at an emotionally charged moment. The concern of the local institutional review board (IRB) (which includes two lay members from the community) is that full disclosure in the immediate aftermath of a death would, by disregarding the cultural norms of prudence and discretion at times of mourning, create distress among the bereaved family members. In the Malawian setting, truth telling (or, in this case, full disclosure) at the wrong time would be seen as naivete, at best, or as cultural insensitivity, at worst.While we agree, in principle, that it would be right to disclose all of the autopsy details before asking for permission to conduct an autopsy, we continually ask ourselves whether it would be good to do this. At the time of death and burial, the family's primary concern for the body of the deceased is the appearance of the face. The eyes should be closed. To be buried with open eyes is a sign of disrespect and our current approach respects these beliefs.We recognize that informed consent is a dynamic process. In the immediate aftermath of the death, we do not explicitly state that we will remove the eyes and replace them with prosthetic eyes nor do we describe how the top of the skull will be removed (using a bone saw) to expose the brain. Our aim in withholding information on aspects of the autopsy is discretion, not deception.Families are invited to return to the hospital to discuss the detailed findings from the autopsy, but few have done so. We are interested in following up with the ∼80 families who have given permission for these research-related autopsies to date. A component of these ‘after the event’ interviews will be full disclosure regarding the removal of the eyes (in the cases where this did occur) and we will do our best to ascertain attitudes regarding our timing of this full disclosure.Our aim in writing the article on ethical jurisdictions was to provoke debate and Rennie's letter suggests that we have succeeded. This area of research is an ongoing and evolving process, and we look forward to contributing another chapter to this debate in the future.