A total of 342 interviews were performed with 110 women and 74 men from 106 families with stored frozen embryos. The majority were Caucasian, employed, married, college educated, identified as a member of a religious group, and reported median incomes of over $100,000. The median number of living children was two per family. The median number of stored embryos per family was six and the average number of years in storage was five years at the time of the final interview. The average annual cost of storage was approximately $500. By the end of the study 26 (24%) of undecided families chose to deliberately store embryos indefinitely, 42 (39%) favored donation to science, 6 (6%) favored using embryos for further attempts as conception, 7 (7%) favored donation to others for family-building, and 3 (3%) favored embryo destruction. The remaining 22 families (21%) remained undecided at the final interview one year later see (). A detailed account of disposition decision-making experiences of these embryo holders has recently been published (2
Participant Demographics, Embryo Storage, and Disposition Decisions
Our analysis suggests (a) the provision of information and support by the infertility clinic played an important role in the disposition decisions made by embryo-holders; (b) participants expected that their physician/IVF clinic would be their main sources of information regarding frozen embryo disposition; (c) participants believed that clinics were under some obligation to assist in the disposition decision because the surplus embryos were generated as a result of the IVF procedure, and (d) embryo-holders voiced a wide range of expectations and preferences for the timing, nature, and specific content of information and support.
Participants looked directly to their clinics and physicians for skilled, informed, personal guidance because they had established a trusting relationship during the IVF process, and believed that physicians had greater access to relevant information. Yet many participants noted that communication with the clinic decreased drastically after they successfully conceived. Others remarked about perceived discrepancies between the amount of information they received in preparation for their IVF procedure and what they received concerning embryo disposition.
Participants were divided over having preference for detailed information about disposition decision options before initiating their IVF cycles or after their pregnancies had been established. While some perceived having to process additional information while they were intensely focused on achieving a pregnancy would have been “overwhelming,” others felt that having more information before they initiated their IVF cycles would have “laid the groundwork” for future decision-making. Of notable effect was the photograph of their embryos given to many participants prior to embryo transfer. Having this picture often led to an increased attachment to the embryos which complicated or inhibited later embryo decision-making. Yet most participants acknowledged that even if they had been more aware of potential challenges of frozen embryo decision-making earlier, achieving a pregnancy was their greatest priority at that time and few would have changed their course of action.
Participants voiced a variety of preferences for receiving information, support and counseling from their IVF clinic. Many embryo-holders wanted detailed written information, but some cited the impersonal nature and relative lack of “importance” or “impact” of pamphlets or other written material, and thought it would be helpful to have a follow-up educational seminar. Several would have liked the opportunity to participate in support groups with other embryo-holders while others envisioned trained, unbiased, “professional” counselors or advocates to provide guidance ranging “sorting through the options” to purely emotional support.
Participants’ recollections of the number and “quality,” “viability,” or “grade” of their embryos at the time they were frozen influenced their decision-making. Participants were particularly interested in (and often uncertain about) how long embryos could remain in storage and still be used for further attempts at conception. Embryo-holders who had few or “low grade” embryos questioned whether it would be worth the emotional and/or financial investment to attempt additional frozen embryo transfers. Participants who had conceived children with frozen cycles were more likely to see frozen embryos as viable.
Some participants remembered receiving information about embryo donation, while others did not and were confused as to whether this was truly an option. Most wanted to select specific criteria for recipients. Ultimately, some participants who initially expressed interest in embryo donation reported abandoning it in part because of the perceived lack of a defined, non-sectarian infrastructure to facilitate donation.
Many participants recalled receiving more information about options for donation to science than about other alternatives, and perceptions of implicit or explicit encouragement by the physician or clinic often played a crucial role in disposition decision-making. Participants solicited by their infertility providers with an option to donate to research often referenced their positive experiences and sense of trust established over the course of their clinical relationship and were not only more likely to donate to science, but, when possible, to donate to a clinic-affiliated research project. Yet a few voiced concerns about the potential for communications to be coercive, or present a conflict of interest.
A perceived lack of information (from IVF clinics, research organizations, or elsewhere) was frequently associated with expressions of generalized fears about science which inhibited disposition decision-making overall and appeared to dissuade some embryo-holder’s from donating to research. For example, participants voiced concerns about embryo misplacement, disposal, or use in the creation of chimeras, for eugenic purposes, or having embryos “grown into babies” for experimentation or a “black market.”. Although many participants expressed the desire for detailed information about research options, including the ability to choose the specific research project for scientific donation of their embryos, others remarked that they would not want to know “too much” about the actual physical procedures that would be applied to donated embryos, anticipating discomfort from knowing details. Some embryo-holders reported that too much medical or scientific terminology could be overwhelming and effectively halt decision-making.
While the vast majority of participants thought the act of discarding embryos was a “waste” of a “precious” resource, the perception that “low-quality” embryos would not be useful for other purposes made the idea of discarding acceptable for a few embryo-holders. Participants reported having very little information about the process of discarding and did not have a sense of what the procedure entailed. Some mentioned the possibility of having them discarded while present in the clinic or being able to take them from the clinic themselves.
Most participants reported that the only post-IVF communication they had with their clinic was correspondence related to storage fees. For those contemplating near-term attempts at conception the monetary costs associated with embryo storage were perceived as acceptable. For participants who viewed their embryos as an “insurance policy,” the costs associated with embryo storage were considered acceptable when their children were young, but as their children aged, the storage costs were perceived as less satisfactory, particularly by the non-gestational partners. Those who were less committed to further attempts at conception reported being influenced to make a decision by actual or anticipated increases in storage fees. Participants were also less committed to bearing the costs of indefinite embryo storage when they felt that they were storing the embryos for use by recipients other than themselves. Some wondered if there was any point in continued storage if the embryos were no longer viable over time.