Donation, Disclosure, and Deception

Andrea Gurmankin's (2001) pilot study supplies valuable information about the initial disclosure of risks to women considering oocyte donation. Her findings are relevant not only to oocyte donor recruitment practices, but to the recruitment of research participants as well. According to widely accepted ethical principles, people must give informed and voluntary consent before they may be exposed to risks for the benefit of others. Initial communications that emphasize financial benefits and omit information on potential harms can mislead prospective oocyte donors and research participants, thus compromising their ability to make informed and voluntary decisions.

Gurmankin is not the first to argue that women are owed truthful information about oocyte donation risks at all stages of the recruitment process. In 2000 the Ethics Committee of the American Society for Reproductive Medicine (ASRM) issued a report entitled "Financial Incentives in Recruitment of Oocyte Donors." The report recommends that:

1. 1. Programs give women accurate and meaningful information about oocyte retrieval and donation, including possible negative physical and psychological consequences;

2. 2. When couples themselves recruit potential donors, programs ensure that such donors go through the same disclosure and counseling process as other prospective donors; and

3. 3. Advertisements citing financial benefits to donors also acknowledge the existence of risks and burdens.

A further issue concerns the proper disclosure standard for recruitment materials and contacts. What is an ethically appropriate method of presenting preliminary risk information? Should advertisements and program receptionists furnish information about specific health risks and burdens? The ASRM Ethics Committee recommended that advertisements simply note the presence of risks and burdens, without specifically describing them. Because problems could arise if receptionists or other untrained individuals attempted to discuss specific medical information, they too should simply state that risks exist and that risks will be discussed in detail when prospective donors talk with professional clinicians.

Risks should also be acknowledged in early communications with prospective research participants. But research recruitment appears to present problems similar to those seen in recruitment of oocyte donors. For example, in their review of research advertisements appearing in the Washington Post, Miller and Shorr (1999) found that sponsors stressed the free examinations, evaluations, and medications available to patients enrolling in studies. Not one advertisement mentioned any research risks or the possibility that participants would be assigned to a placebo control group.

From a broader perspective, prospective oocyte donors and study volunteers would be less vulnerable to misleading advertisements if media and other public information sources offered more accurate background information about these activities. Many people form an impression of oocyte donation and research participation before they encounter specific advertisements and other recruitment materials. News stories, personal accounts, and even fictional tales of such experiences may influence the beliefs people bring to the formal information disclosure process. This possibility heightens the need for infertility and research professionals to discover and correct any mistaken ideas individuals may have about the activities they are considering.

Finally, it is ironic that a study criticizing incomplete and inaccurate information disclosure involved incomplete and inaccurate information disclosure. In Gurmankin's study, interviewers told oocyte donation program staff members that they were "interested in learning more about becoming an egg donor," which "led the respondent to believe that the interviewer wanted to donate her eggs." Two institutional review boards approved the study, presumably because it sought publicly available information or because committee members believed it met the requirements for waiver of informed consent.

Ethicists frequently criticize studies in which misleading information is given to study participants. Those challenging such studies question whether the knowledge gained justifies the deception and whether adequate data could be obtained without deceiving participants (Wendler 1996). In this case the study generated valuable information. But could adequate data have been collected without misleading oocyte program staff members? If the interviewers had explained that they were conducting a survey about how programs present risk information, would the responses have been unacceptably distorted? One way to ascertain this would be to conduct a few interviews using each approach and to compare the quality of the data collected.

As bioethicists engage in more empirical studies, there will be other cases in which incomplete information...