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Keywords:

  • ethics;
  • research;
  • endometriosis;
  • motivation

ABSTRACT

BACKGROUND:  The objective of this study was to identify factors motivating women to take part in endometriosis research and to determine if these factors differ for women participating in clinical versus basic science studies.

METHODS:  A consecutive series of 24 women volunteering for participation in endometriosis-related research were asked to indicate, in their own words, why they chose to volunteer. In addition, the women were asked to rate, on a scale of 0 to 10, sixteen potentially motivating factors. The information was gathered in the form of an anonymous self-administered questionnaire.

RESULTS:  Strong motivating factors (mean score >8) included potential benefit to other women's health, improvement to one's own condition, and participation in scientific advancement. Weak motivating factors (mean score <3) included financial compensation, making one's doctor happy, and use of ‘natural’ products. No difference was detected between clinical and basic science study participants.

CONCLUSION:  This study is the first study to specifically investigate the factors that motivate women to take part in endometriosis research. Understanding why women choose to take part in such research is important to the integrity of the informed consent process. The factors most strongly motivating women to participate in endometriosis research related to improving personal or public health; the weakest, to financial compensation and pleasing the doctor.