WHAT MOTIVATES WOMEN TO TAKE PART IN CLINICAL AND BASIC
SCIENCE ENDOMETRIOSIS RESEARCH?*
SANJAY K. AGARWAL, SYLVIA ESTRADA, WARREN G. FOSTER, L. LEWIS WALL,
DOUG BROWN, ELAINE S. REVIS AND SUZANNE RODRIGUEZ
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 indi-
cate, 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 moti-
vating factors (mean score <3) included financial compensation,
making one’s doctor happy, and use of ‘natural’ products. No differ-
ence was detected between clinical and basic science study
participants.
CONCLUSION: This study is the first study to specifically investi-
gate 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.
* Presented at the VIII World Congress on Endometriosis, San Diego, CA. 25 Feb 2002.
Address for correspondence: Sanjay K. Agarwal, MD, FACOG, Department of Reproductive Medicine, UCSD School of Medicine, Basic Science
Building #5040, 9500 Gilman Drive, La Jolla, California 92093-0633, Phone: 1-858-534-8930, Fax: 1-858-534-8856. e-mail: skagarwal@ucsd.edu
Bioethics ISSN 0269-9702 (print); 1467-8519 (online) doi:10.1111/j.1467-8519.2007.00552.x
Volume 21 Number 5 2007 pp 263–269
© 2007 The Authors. Journal compilation © 2007 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA.