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Table 5 Quotations for the theme of ‘Unique challenges to informed consent’

From: Key ethical issues encountered during COVID-19 research: a thematic analysis of perspectives from South African research ethics committees

Sub-themes

Quotations

Impact of fear and isolation on individual autonomy

Even in terms of proxy consent, where families are not allowed to accompany patients at the moment or to visit…with layers of grief, and I suppose it’s exacerbated with anxiety from COVID is that families don’t fully understand or comprehend the information (REC6)

There are so many issues with informed consent. And I do have to wonder if we are respecting autonomy, if we are ticking boxes a lot of the time (REC8)

It’s a broader issue, not just related to the pandemic, but at the moment, I’m really worried about poor Mr. Jones getting his 10 different documents to sign. And, you know, and, and he’s doing it in isolation, by himself, he is scared in hospital, his family aren’t with him, you know, what choice does he really have? (REC11)

Challenges ‘on the ground’

Informed consent in a pandemic is such a minefield to navigate …it’s really ill patients that are hospitalized and there are issues of capacity to consent, who takes consent, the pragmatic realities around consenting (REC3)

Again, it’s this balance between ensuring autonomy and overburdening and duplication and safety to the researcher (REC12)

Divergent views on consent waivers

We’re in a crisis situation in terms of ability to get next of kin aspects where we thought that independent witnesses would be freely available and be devised appropriately… (REC21)

I think we just need to work on in terms of when is the right time to speak to the family. What is the information and how should we be transferring information to family members? (REC4)