Table 1

Participant-generated risks and risk mitigation strategies

RiskRisk Mitigation
Engagement with ethical issues of participation was perceived as difficult, which could limit engagement.Our challenge is to test if collaborative discussion of risks and benefits will be more enjoyable and engaging.
Participants could learn something unpleasant (eg, results that require medical attention).Participants were made aware of this risk in the initial project discussion, before taking any lipid tests.
Frequent testing can cause some people anxiety.After some discussion, and polling of participants, we agreed that this risk is minimal in our group.
Participants could be disappointed by learning the actual bounds of uncertainty of the data, even if these bounds are comparable to that of professional tests.This topic was discussed at length in the beginning of the project and was also considered a benefit. Consumers often do not realise the extent to which data from at-home testing can be uncertain.
Reputation risk to participant-organisers if ethical concerns are not well understood.Participant-organisers convened all participants to engage in discussion of risks and benefits.
Reputation risk to participant-organisers if training on how to use the test system is not effective.Participants were thoroughly trained, and training materials and expertise were made available for the entire duration of the project.
Participants could feel peer-pressure to carry out an experiment.Participants were encouraged to only carry out testing that was personally interesting and productive.
Reputation risk to all project participants if data-quality is questionable.Participants were incentivised to collect good data because they conducted personally-relevant experiments.
Conflict of interest concern by participants regarding funding.Goals and funding were clearly stated to all before joining the project, and funders did not view the manuscript or advise on project content.
Demands on participants’ time.There was no minimal required time commitment. Our goal was to be as supportive as possible and to understand reasons for halted projects as they arrived.
Minor pain and bruising.Participants were trained with techniques to minimise discomfort. Participants chose how frequently to sample and could stop at any point.
Almost negligible risk of infection.Participants were given sterile supplies and trained to use equipment safely.
Risk of being penalised in the future based on data being read by others and associated with a sanction by insurance companies.All participants could keep their data private and offline. Data were removed from group-spreadsheet post-project unless participant expressed interest in keeping the data public.
Quantified Self as a movement puts itself at risk by stumbling across legal and/or social liabilities.Transparency was maintained about risks and benefits, and multiple opportunities were provided for participants to reflect.