On February 23 and 24, 2016, the Centre for Biomedical Ethics’ Funding Initiative hosted the second annual Asian Bioethics Colloquium (ABC) at Park Avenue Rochester Hotel in Singapore. The conference provided a forum for a dozen Asia-based early-career researchers to present their work, and to receive feedback and guidance from established bioethics scholars.
Speakers covered an impressive array of topics: from data protection concerns arising out of commercial genome sequencing in China to the moral status of gestational surrogacy in Islamic jurisprudence. Indeed, it would go beyond the scope of this blogpost to summarize all twelve presentations in sufficient detail. But I do want to take the opportunity to highlight two contributions that should give Singapore’s research and clinical ethics community food for thought.
The first presentation that I want to highlight was by Dr Aimi Yusof (Universiti Teknologi MARA, Malaysia) and carried the self-explanatory title ‘Is Variation in Research Ethics Committees’ Decisions Acceptable?’ In response to that question, Dr Yusof teased out two factors that suggest why too much variation is problematic. One has to do with inconsistency in the protection of research participants: if one IRB deems a particular level of risk to be within the acceptable range, while another finds the level of risk exposure substantially unjustified, this might cast doubt on the adequacy of the overall system of participant protection. Another problem with excessive variation in IRBs’ decisions is that it threatens to undermine researchers’ confidence in the review system. In the worst case, this would lead to less compliance and less trust in the review process. How then did Dr Yusof propose to deal with these problems? On a theoretical level, she invited us to distinguish between variation at the Procedural Stage and variation at the Content Stage of IRB decision making. Roughly, at the Procedural Stage committee members raise, what they take to be, the relevant considerations, values, principles etc. At the Content Stage, committee members engage in weighing, balancing, etc. of all the factors that were identified at the Procedural Stage. Dr Yusof suggested that variation is more acceptable at the Content Stage than it is at the Procedural Stage. Still, one might wonder, what is her practical suggestion for decreasing the more problematic type of variation at the Procedural Stage? Here, things get interesting: Dr Yusof proposed a ‘case law’ model, where ‘case law’ is essentially a collection of novel decisions made by the courts which act as precedent for future similar cases. Adopting this model for the research review process would mean collecting IRBs’ decisions on various cases and then treating them, if not as binding precedent, then at least as guidance for future similar cases. This procedure, Dr Yusof suggested, could guarantee stakeholders that any decisions made would be justified based on previously documented decisions. Of course, people might remain skeptical about the logistics of the proposal. Asking IRBs to release documented decisions would certainly lead to an increase in administrative work. More importantly, the proposal raises important questions about the confidentiality of the submitted protocols. Yet, these problems might be overcome if the case bank is accessible only to a small number of select individuals (e.g. IRB members and administrators).
The second presentation that I want to highlight is ‘Family Presence During Cardiopulmonary Resuscitation: From East to West’ by Dr Zohar Lederman (NUS). First off, Dr Lederman presented empirical data suggesting that healthcare professionals in both Eastern (read: Asian) and Western settings largely oppose family presence during resuscitation (FPDR). In Singapore, this attitude is particularly pronounced: Lederman cites one study according to which 80% of Singapore doctors and 72% of nurses object to FPDR. Medical and institutional guidelines commonly leave the matter of family presence to the attending physician’s discretion. In effect, this means that family presence is often not offered. Yet, Dr Lederman argued, there are no good reasons for disallowing FPDR. First, there is no good evidence that FPDR actually lowers the patient’s chance of survival in any way. Second, the mere dislike of healthcare professionals of FDPR cannot, by itself, ground an institutional or medical policy of banning FDPR. Of course, healthcare professionals have a right to feel safe in their workplace and not be threatened by grieving relatives. Accordingly, if relatives show signs of violence, there are grounds for promptly denying family presence. However, the mere possibility of violent interference (an extremely rare scenario, as Dr Lederman noted) can hardly ground a categorical ban on family presence. With little reason to disallow FDPR, what counts in its favor? Here Dr Lederman points out that FDPR may aid the family’s grieving process and may provide them with a chance to say ‘good bye’. There is even some evidence that shows benefits to relatives in terms of preventing complicated grief, depression and PTSD. Apart from the views of family members, it is perhaps even more important to take into account what patients want. It is not implausible to think that some of them have a preference for family presence. This would be more than a mere preference for treatment but, more accurately, could constitute a preference about end-of-life treatment. As such, we should not easily dismiss it. Even if all of this is true, we might wonder how we should practically implement recording patients’ preferences for FPDR. Here, Dr Lederman is comfortable with three suggestions for the case of Singapore. First, healthcare professionals (especially family physicians) should broach the topic of FPDR with their patients when discussing Advance Care Planning. Second, the issue of family presence should be addressed in future iterations of the Advance Medical Directive form. Third, and perhaps most ambitiously, individuals’ preferences on an array of treatment options, including preferences for family presence, should be documented on a ‘treatment preference card’ that individuals carry along at all times. This is comparable to organ donation cards used in some jurisdictions.
Let me now turn to you, our readers: what’s your take on variation in IRB decision making? Do you think establishing a case bank is a desirable and practicable solution? And, do you think patients and families should be given the option of FDPR? If yes, how should this be implemented?