In lieu of an abstract, here is a brief excerpt of the content:

The American Journal of Bioethics 1.4 (2001) 23-25



[Access article in PDF]

How Should IVF Programs Handle Initial Disclosure of Information to Prospective Ovum Donors?

University of Tennessee

In her paper "Risk Information Provided to Prospective Oocyte Donors in a Preliminary Phone Call," Andrea Gurmankin (2001) presents the results of a pilot study evaluating the thoroughness with which infertility programs provide information about the risks of ovum donation when first contacted by prospective donors. This is a worthy research topic because the voluntariness of consent to oocyte donation depends on the initial risk information being accurate and thorough. This influence of initial information on voluntariness is due to several factors. First, it is common for infertility programs to offer large payments for ovum donation. As an illustration of the sums involved, there was a recent debate in Fertility and Sterility over the practice of paying $5,000 to ovum donors (Sauer 1999;Bergh 1999). Gurmankin points out that even higher amounts are sometimes paid, citing an offer to pay a year's tuition to a student donor at an Ivy League university. Second, ads that recruit donors are targeted toward groups likely to have financial need, such as college students, which means that payments will often be a significant incentive. Third, there is concern that understating the risks in the initial communication will in-fluence a person toward donating and that this influence will persist even if accurate information is later given. Gurmankin discusses psychological research supporting this contention, but support also comes from the familiar analogy of lowballing by car salespeople. Here, customers are enticed by an initial low price;when they are ready to [End Page 23] buy, the true higher price is revealed. Presumably, lowballing works because the customer has become invested in the idea of buying the car. In ovum donation, a person to whom risks are understated at the beginning might not learn about the true risks until after an office visit for a screening interview (American Fertility Society 1994a, 1994b). By the time an accurate description of risks is given, the prospective donor could already have become invested in the idea of donation, especially if the risks had been minimized and the payment emphasized. For this reason it is important that initial information about risks be accurate and thorough.

In Gurmankin's study a researcher made phone calls to a sample of infertility programs that recruit donors through college newspapers. The researcher posed as a prospective donor and asked about three risks: the risks and side effects of the medications given to donors;the risk of ovarian cancer following use of superovulation drugs;and the risks of the retrieval procedure. Although the researcher was deceptive toward the persons answering the calls, federal regulations for protection of human research subjects permit deceptive research provided the requirements of the regulations are otherwise met and the following conditions are satisfied:

  1. the research involves no more than minimal risk to subjects;
  2. the absence of informed consent will not adversely affect the rights or welfare of subjects;
  3. the research could not practicably be carried out if informed consent were obtained; and
  4. whenever appropriate, the subjects will be provided with additional pertinent information after participation .
(45 CFR 46.116)

Gurmankin reports that her study received institutional review board approval.

The researcher making the phone calls noted whether information was volunteered or provided in response to a specific question and whether it was given by phone or sent by mail. Answers to the three risk questions were scored—zero, one, or two—with a score of two reflecting a reasonably accurate and thorough answer and a score of zero reflecting an extremely deficient answer.

It is important to keep in mind the small sample size involved. Therefore, I shall summarize the results by giving the numerators and denominators. Out of nineteen programs contacted, nine volunteered no information about risks, either by phone or mail. Four programs responded to questions by sending information by mail rather than answering on the phone. (This is acceptable, it seems...

pdf

Share