Attitudes Towards Medical Research Participation Among Those With Down Syndrome and Their Caregivers

In the United States, recent increases in funding and support for research related to Down syndrome have led to increased opportunities for research participation. It is critical to understand how individuals with Down syndrome and their carers view participation in research, as these individuals are major stakeholders in the research process. The goal of this study was to collect feedback regarding attitudes towards research directly from individuals with Down syndrome, as well as their caregivers.

A cross-sectional online survey of individuals with Down syndrome and caregivers assessed attitudes towards research participation, including feedback regarding facilitators and barriers to participation, willingness to participate in specific procedures, and how the research process might best serve participants.

Respondents included 46 persons with Down syndrome (age 16-61 years; 48% male, 52% female) and 216 caregivers (age 29-88 years; 9% male, 91% female). The potential to improve the lives of people with Down syndrome emerged as a strong incentive for research participation among both caregivers (96%) and respondents with Down syndrome (82%). Compared to caregivers, respondents with Down syndrome were more open to participating in research that included the risk of pain or the need to do something difficult. Compared to respondents with Down syndrome, caregivers responded more positively to being able to stay with the focus person during research procedures. Response patterns showed few relationships to age, sex, or previous research participation.

The responses of people with Down syndrome and caregivers showed some similarities, with notable differences highlighting the importance of respecting the autonomy of the participant. Specific recommendations related to the research process include the need to give participants understandable, thorough information related to research procedures and the importance of consistent communication.