Abstract:
Pandemics challenge clinicians and scientists in many ways, especially when the virus is novel and disease expression becomes variable or
unpredictable. Under such circumstances, research becomes critical to inform clinical care and protect future patients. Given that severely
ill patients admitted to intensive care units are at high risk of mortality, establishing the cause of death at a histopathological level could
prove invaluable in contributing to the understanding of COVID-19. Postmortem examination including autopsies would be optimal.
However, in the context of high contagion and limited personal protective equipment, full autopsies are not being conducted in South
Africa (SA). A compromise would require tissue biopsies and samples to be taken immediately after death to obtain diagnostic information,
which could potentially guide care of future patients, or generate hypotheses for finding needed solutions. In the absence of an advance
written directive (including a will or medical record) providing consent for postmortem research, proxy consent is the next best option.
However, obtaining consent from distraught family members, under circumstances of legally mandated lockdown when strict infection
control measures limit visitors in hospitals, is challenging. Their extreme vulnerability and emotional distress make full understanding of the
rationale and consent process difficult either before or upon death of a family member. While it is morally distressing to convey a message
of death telephonically, it is inhumane to request consent for urgent research in the same conversation. Careful balancing of the principles of
autonomy, non-maleficence and justice becomes an ethical imperative. Under such circumstances, a waiver of consent, preferably followed
by deferred proxy consent, granted by a research ethics committee in keeping with national ethics guidance and legislation, would fulfil the
basic premise of care and research: first do no harm. This article examines the SA research ethics framework, guidance and legislation to
justify support for a waiver of consent followed by deferred proxy consent, when possible, in urgent research after death to inform current
and future care to contain the pandemic in the public interest.
