Is there a place for benevolent deception

In ‘Ethical jurisdictions in bioethical research’ [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], J.M. Mfutso-Bengu and T. Taylor describe a conflict between a host ethics committee in Malawi and a remote ethical committee in USA, concerning the wording of a consent form. The study in question involved the removal of the eyes of children who had died of malaria in order to study the relationship between retina abnormalities and concomitant histological findings. Consent for autopsy was requested from the parents. On the locally approved Malawian consent form, parents were told an autopsy would be performed, but eye removal was not mentioned specifically. The remote ethical committee in USA found the form unacceptably vague on this point.Mfutso-Bengu and Taylor believe that the view of the local ethics committee should override that of the committee in USA. They argue that: (i) disclosing more specific information about eye removal would unduly upset (and show disrespect towards) the parents; and (ii) greater disclosure would probably dissuade most families from participating in the research. As long as the benefits of non-disclosure outweigh the risks, and no international ethical codes are breached, the position of the local ethics committee ought to be upheld.Mfutso-Bengu and Taylor rightly state that bioethical requirements must be adapted to local circumstances. There is no good reason to believe that the views of remote ethics committees in the developed world should always win out in such conflicts. What is worrying about the case in question, however, is how the opinion of the local Malawian ethics committee is assumed to be identical with the views of local individuals and community. Even if it is true that disclosure about autopsy would be distressing, that does not necessarily mean local families would find non-disclosure, to avoid distress, acceptable. Mfutso-Bengu and Taylor write that local families are mostly concerned about the physical appearance of the deceased and once these concerns have been addressed, ‘…the risk of creating a situation in which families would feel deceived by virtue of incomplete disclosure is low’ [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]. But the authors have not engaged in community consultation or research about how the local community feels about benevolent deceptions of this kind, and so there is no real support for this claim. If they are confident of their ethical position, would they be willing to record interviews in which parents who gave consent were subsequently told about the deception? That might reveal how the local community and not just the local ethics committee feels about such matters. Furthermore, benevolent deceptions run not just the risk of insulting individuals, but also destroying the trust between research teams and the community they work in. What effect will common knowledge of selective disclosure on consent forms have on future studies in Malawi?If we remove argument (i) from the picture, what are we left with? Argument (ii), on its own, is simply a failure to disclose information to facilitate research. This reason for non-disclosure is not supported by international ethical codes for obvious reasons. Non-disclosure simply to promote research goals is at odds with the practice of seeking informed consent.In conclusion, it is not obvious that the standpoint of the Malawian ethics committee should be given priority in this case. This is not an issue of imposing foreign standards or unjustly treating local ethics committees as inferior, but a matter of letting local communities speak for themselves.