# Trust, but Verify: Informed Consent, AI Technologies, and Public Health Emergencies
## 4 Informed Consent
### Issues with Consent
Alternatively, they may simply trust that the researcher is competent and means well which in turn encourages them to trust the researcher [47; 48]. Indeed, there is anecdotal evidence that participants would prefer just to get on with the research [48]; and in areas like clinical treatment, consent is almost irrelevant [61]. Whether or not the consent process really reflects true autonomy is not always clear [26]. Like others, [PERSON] et al. [51] make a distinction between consent (the formal agreement to engage based on participant competence) and assent (a less formal indication of such agreement). So, while a parent or guardian must provide legally based consent for their child to take part, the child themselves should provide assent. The latter is not legally required, but without it there is no monitoring of continuing motivation and willingness to carry on with participation. Assent is an informal agreement then which should be in place to preserve the quality of the research itself though not required by law. Irrespective of whether consent or assent, there is an argument which says it should be re-negotiated throughout a given research study [48; 62]. Otherwise, and learning from considerations around biobanks and the ongoing exploitation of samples, informed consent may become too broad to be effective [63] and need continued review [64]. Finally, perhaps most fundamentally, there is the question of whether consent based on full disclosure of information is practical (see Section 2 above) or even desirable. There are contexts within which deliberate deception can be justified [33], and where traditional informed consent is actually undermining research progress [65]. Similarly, as well as competence and the emotional implications of illness or duress discussed above, there are always cases where full disclosure may not be possible. One such example, which will be explored below, concerns public health emergencies and vaccination programs, as well as inadvertent third-party disclosures [66]. Even within a clinical context, [PERSON] suggests informed consent be replaced with an informed request: extending that to research, the participant would effectively respect the researcher's competence and agree on that basis to proceed. Given the nature and extent of issues raised in the literature, it is important to reconsider the purpose of the relationship between research participant and researcher in light of generalised deontological obligations such as autonomy (respect for the individual), benevolence and non-malevolence, and justice. In legal terms alone, problems with informed consent have been summarised thus [23]: consent may be _unwitting_ (or unintentional) as in cases where acceptance is assumed by default [22], non-voluntary or _coerced_, and _incapacitated_ in that a full understanding is not possible [23]. With that in mind, empirical research is ultimately a negotiation between the researcher and participant, or indirectly between researcher and the data they can access. So, it is unclear whether the informed consent process is adequate to capture what is needed for regulatory compliance or even the reality of empirical research. A research participant is effectively prepared to expose themselves to the vulnerability that the research protocol may not provide the expected outcomes, but believe that the researcher respects them and their input; researchers will do what they can to support participants throughout the research lifecycle and consider the implications of eventual publication. The willingness to be vulnerable in this way has been discussed repeatedly in the trust literature within the social sciences for many years. After a review of implications for technology acceptance in the next section, discussion subsequently turns to the potential benefit of a trust-based approach to research participation.