Testing New Technology for People with Down Syndrome

For people with Down syndrome, living independently can present significant challenges. At the same time, studies show that many wish to do so. Researchers want to test new technology that could potentially help people with Down syndrome in their daily lives. This involves customized applications that can help users structure their days. For example, an application has been developed where users can enter their full daily schedule with symbols and alerts. The technology could thus give users better conditions for managing independently in everyday life. At the same time, there is some risk that participants may experience stress and frustration—for example, the alert sounds could be perceived as annoying.

Test participants are recruited through online advertisements. Those who express interest are asked to consent to testing and interviews. The testing will involve a person over 18 years old with Down syndrome receiving a tablet. The participant will receive training with the application and then test it for six weeks. After the testing period, participants will be followed up with interviews about their experiences. The researchers state that they will ensure that participants understand the questions. It has been decided that those who complete the testing can purchase the tablet with the app at a heavily reduced price, while those who wish to withdraw during the study must return the equipment.

Questions for discussion:

• How can the researchers best ensure that the requirement for free and informed consent is met at the start of this project?
• Is there anything the researchers can do to reduce the risk of stress and frustration during the testing period?
• The follow-up interviews can help strengthen the process of obtaining free and informed consent by providing an extended opportunity for clarifying questions. In what ways could the interview situation potentially undermine voluntariness?
• Is it ethically concerning that participants are allowed to purchase the equipment at a reduced price after participating in the research project? Is it acceptable that those who withdraw do not have the same opportunity?