As scientists start to value opinion from the public more and more, data collection and data sharing play important roles and are raising ethical questions for iGEMers. Here, we focus on the discussion related to human sample collection and online data sharing, which can include anything from answers to questionnaires to genetic information.
A common ethical problem related to data collection is the imbalance of information between the reseachers and the participants. Participants are usually not aware of the full potential or application of the research project, either because they were not told or they didn't understand the scientific wording. Most of the time, this is not intentional. It happens because the researchers did not have a complete plan of what they would be doing with the sample when they started the collection, or because the scientific concepts are so familiar to the scientists that they fail to explain them in plain language for the participants. The first reason is especially common for iGEM projects. Therefore, a well-written and carefully reviewed protocol is essential before the collection process starts. The protocol should not only include the experiment steps, but also who the participants are, why they are selected, how the data would be interpreted and what would happen to the sample after the study. In the experimental steps, you need to include method of storing and shipping. Think about how accurate and concentrated you need the samples to be while choosing the shipping method. In our project for Paris Bettencourt iGEM team in 2014, this protocol was only completed after numbers of runs of test. Therefore, remember to schedule the testing of different protocols in your project. The protocol can be technical, however a more easily understood version of it would be included in the consent form. Basically, protocol is the information package for researchers, while consent form is the package for the public.
The next step after sample collection is often data sharing. Most of the time, for iGEMers, this will be done through the internet. Online data sharing has constantly posed challenges to privacy protection. Therefore, if you decide to publish your data online, there are extra steps you need to take. First, you need to include what and how data would be shared in the consent form. Second, personal information, including name, address, birthday and etc should be removed before publishing. If there is certain information that you need to keep, such as gender and age, say it in the consent form. Third, review your wording before publishing. Remember to review it with different groups: other iGEM teams, your director and more importantly, someone who has not been working on this project and is not an expert in biology. When you focus on one perspective for too long, it is hard to see problems that can be obvious. Make sure the wording is neutral and does not carry extra connotations. You should also include and show the people who have no idea of statistics how the interpretation was made and how exact the results are. Make sure they understand the message you are trying to convey.
A couple important things to remember: you need a detailed protocol for yourself before the collection starts, so that you will know what information to present to the participants for information balance; do not a**ume that everyone understands the technical terms; and review your publication with different parties. Online data sharing and human sample collections are relatively new for iGEM projects. We therefore encourage you to think about other main concerns. Under what condition should the participants be paid? How far can information from one study be extended to other areas? How much credibility can we give to online data? Thinking ahead is probably the most important part of encouraging ethical practice and creation.