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. |