My husband John had done everything the Human Subjects Committee asked. He reviewed the study with his departmental ethics representative, completed online training on human subjects, and, most importantly, created clear consent forms for his study, with this vital clause:
Right to Withdraw: Your participation in this study is completely voluntary. You have the right to withdraw from this study at any time, without penalty.
Prospective subjects would read the consent form and, if interested in participating, sign their name and then complete the questionnaire. The consent form listed the contact information for all researchers, including John, so they could contact them with any questions — by phone or e-mail.
Additionally, the consent form said the following:
We will conduct several 30-60 minute focus groups. The American treatment program will be discussed and the participants will be asked to comment on the program. If you are interested in being contacted about participating in the focus group, check here_______, and provide us with a means of contact:
phone__________________ email________________________ cell phone_________________
After John went to China, he distributed his consent forms — with the questionnaires — to parents of young children via a school teacher. To John’s surprise, out of 150 returned questionnaires, around 90 participants volunteered to participate in focus groups. We were thrilled — but surprised at the same time. Most studies in the US, including psychological studies like my husband’s, have difficulty recruiting participants, especially for discussion groups. Why was it so easy in China?
But when John called one of the focus group volunteers, something seemed wrong. Continue reading ““What did I just sign?”: On informed consent in China”