Preparing for the morning session

Overall aim: To inform the audience about the ethics procedures used by your ethics committee, how and what ethical aspects your committee consider when reviewing a proposal.  Who is involved in the process and how to engage (student) researchers in this process?
We will do this by looking at 3 case studies:

1. Tinder Case study
2. Your own case
3. Beyond the "normal" human-research ethics evaluation

We hope that each ethics committee could make an 15-20 minutes presentation in English to discuss how they would address these 3 cases.

 

Case 1: The Tinder case study
See the case described below.  Imagine that (student) researchers would want to conduct this research and apply for ethical review from your committee. Please describe the procedure that would be followed. Explain what points the committee would focus on during the reviewing. Also, the advice (decision) they would likely give, and also the modifications the researchers could make so their proposed research would be more ethical "acceptable" for your committee.  Also, what is the strategy of the committee to make (student) researchers more engaged with the ethical issues associated with their research?

The case description
Students want to do research on the security of location data in the Tinder app. Tinder is a dating app that uses Facebook profiles and real-time location data to make matches that are near you. The implementation of the proximity detection has been problematic in the past. The first version sent GPS locations of matches to other users to calculate distance. A second version calculated exact distance on the server and sent that directly to users, which allowed them to use trilateration to calculate exact distance of other users. Data traffic from and to Tinder servers is encrypted, but it is possible to write a program to interact with the Tinder servers using their API. In this way you can spoof location data and gather information on matches.

In the past Tinder has reacted very passively and slowly to vulnerability disclosures and other problems. The students propose to use test profiles to interact with fellow students, only after informed consent has been given. To complicate things: while conducting experiments students find out that Tinder is really popular at the University. This makes it near impossible to find back the students that provided informed consent.

  • What are the conditions under which this experiment may be approved?
  • Is this type of research acceptable from an ethical point of view?
     

Case 2: Your own case
We like to see if there are ethical challenges that are specific to the technology-related research conducted on your university. Therefore, we would like to invite you to present a case that highlights these "unique" ethical challenges because of the technological domain.
 

3.  Beyond the "normal" human-research ethics review
Pick one of the two cases described below. As in the Tinder case study, imagine that researchers apply for an ethics review. Explain the ethical aspects that would raise concern. Also, reflect on how your committee would address the ethical issues that would go beyond the traditional focus about the well-being for the research participants involved, for example, whether it is ethical to do research on these topics, and how would your committee address such questions.

Case 3A description: The smartest district in the world - ‘ when big data meets big brother’
A consortium of cities, companies and universities want to develop the ‘ best smart district’ in the world. Test location is a new ‘ VINEX-wijk’ somewhere in the Netherlands titled . Big data will be gathered to measure human behaviour.

People are invited to come and live in this neighbourhood for a low rent provided that they (and their family members) are willing to share the following data during a period of one year:

  • Transport behaviour 
  • Health style (sport, food, alcohol, drugs)
  • Energy consumption in and around the house
  • Use of plastics
  • Social behaviour and intermingling with other nationalities
  • Waste water (chemicals present)

The data will be aggregated and anonymized on street level. On the basis of this, streets with get a so-called citizen’s score.

  • What are the conditions under which this experiment may be approved?

 

Case 3B description: Should we design robots to comfort people who are about to die?
The experiment is to test robots who can give comfort (talking, stroking) to persons who are about to die. The robot is sitting the whole day next to the patient. The aim of the research is to see whether this alleviates suffering. Patients will take notes and their expressions are video-recorded. The robot is 100% safe. The participants are able to give informed consent (not mentally ill).

  • What are the conditions under which this experiment may be approved?
  • Is this type of research acceptable from an ethical point of view?
  • Is this research ‘WMO-plichtig’ ?