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Reprint requests: Nancy J. Kenney, Ph.D., Departments of Psychology and Women Studies, University of Washington, Box 351525, Seattle, WA 98915-1525 (FAX: 206-685-3157).
To survey motivations, expectations, and experiences of egg donors in the United States and their assessments of physical, psychological, and social after-effects of their donation(s).
Design
Questionnaire comprising open-ended and multiple-choice items, administered on the Internet or by mail.
Participant(s)
A total of 80 women who first donated eggs between 1989 and 2002 (at least 2 years before survey completion) in 20 states.
Main Outcome Measure(s)
Self-report questionnaire assessing donors' demographic characteristics, their initial awareness of and interest in egg donation, first egg donation experience, and reflections on it.
Result(s)
Participants cited both altruistic and financial reasons for becoming egg donors. Donors' self-reported awareness of physical risks before their first donation was not well-matched with the physical side effects they actually experienced. Psychological risk awareness before donation reflected more challenging outcomes than the women actually experienced. The majority of donors reported postdonation satisfaction, although a minority reported long-term physical and psychological concerns that they attribute to having donated eggs.
Conclusion(s)
These data offer a comprehensive overview of issues important to the recruitment and well-being of egg donors and suggest some issues related to the donor's satisfaction with the process and to their long-term health for future study.
Over the last 2 decades, anonymous egg donation has played an increasingly important role in the array of available fertility treatments in the United States. In 2005 (the last year for which statistics are available), donor eggs were used in approximately 13.7% of all IVF cycles (14,646 cycles overall) (
). In the U.S., egg donation occurs under conditions that are relatively unique on the worldwide stage in that there is limited insurance coverage for such fertility treatments, and individuals primarily pay for their assisted reproductive medical services out of pocket. In addition, egg donation has been very loosely regulated by the U.S. government; oversight of egg donation in the U.S. has primarily occurred through the issuance of professional guidelines by the American Society of Reproductive Medicine [2] and through the annual collection of statistics of egg donation cycles [as volunteered by clinics] by the Centers for Disease Control and Prevention. It is also common practice for egg donors to be recruited by clinics, often through advertising media, and offered a financial incentive for donating eggs to couples seeking fertility treatment. Recruitment procedures typically connect donor remuneration with her role in helping infertile couples reach their goal of reproductive success. Financial incentives are intended as reimbursement for the donor's time and effort related to the egg donation procedures and for the medical risks she undertakes by participating in the procedure (
In most Western European countries and in Canada, in contrast to the U.S., egg donation has been closely regulated by the state and occurs without remuneration to donors. In the United Kingdom (UK), for example, egg donation is viewed as similar to organ or tissue donation. Eggs can be neither bought nor sold; they can only be given freely. The UK regulatory conditions do permit indirect monetary gain for egg donation through egg-sharing programs. Women undergoing egg harvesting for personal IVF procedures may have the costs of their own treatment reduced if they are willing to donate some of their harvested eggs to another party seeking fertility treatments.
Studies assessing the reasons why women donate eggs in countries such as Canada and Finland, where payment for egg donation is either severely limited or prohibited, report that women have largely altruistic reasons for their participation in the procedure (
). These studies also indicate that donors tolerate the procedures well, are largely satisfied with their experiences, have few (if any) regrets about donating, and have some willingness to donate eggs again. In the UK, where direct payment is banned but indirect monetary gain is a possibility, egg donors report both altruistic and self-interested motives (
). Comparison of statistics on the frequency of use of donor eggs in IVF cycles in the U.S. and in countries that limit or prohibit payment to egg donors suggests that the offer of direct remuneration increases the number of women participating in the process. The most recently available statistics from Canada, Finland, and the UK (all of which restrict direct payment) indicate that donor eggs are used in only an estimated 5% of all IVF cycles in those countries, fewer than half the proportion of cycles involving donated eggs in the U.S. (
Although such statistics suggest that remuneration plays a major role in women's decision to donate eggs in the U.S., studies of the motivations of U.S. egg donors indicate that their reasons for donating are both similar to and different from those of their counterparts in other countries. Research clearly indicates that U.S. egg donors are motivated by both monetary compensation and altruism. The financial incentive has been cited as a primary motivator for many donors in the U.S., particularly as the amount of financial remuneration increases (
) posited that this financial compensation may be especially important for young donors who are college students who may have more limited financial resources and higher debt. Additionally, Klock et al. (
) reported that repeat donors are more likely to be motivated by financial factors.
Even though the offer of financial compensation is a standard tool used to recruit U.S. egg donors, advertisements seeking egg donors in the U.S. also emphasize the altruistic impetus for egg donation; and U.S. donors have reported that the possibility of helping others played a major role in their decision to donate their eggs (
) found that even when donors were initially attracted by the financial compensation, some later reported more altruistic reasons for donating.
Studies that have evaluated donors' postdonation perceptions of the process have reported that most donors are satisfied with the procedure but suggest that there are some areas for concern. In general, studies of U.S. egg donors have indicated high “postdonation satisfaction rates” and some willingness to donate again (
). First-time donors who had high financial motivations for donating reported being less satisfied with the process and were also less likely to express willingness to donate again (
) reported that donors are not always satisfied with their clinical experience, the physical discomforts of egg donation, and/or the financial compensation that they received.
To date, egg donors' long-term attitudes towards the experience have not been well understood. The need for this information is pressing, especially given that 95% of the 422 clinics reporting to the Centers for Disease Control and Prevention in 2005 offered egg donation services (
). None of the previously published studies assessed women's expectations about the procedures and how those expectations matched (or failed to match) their actual donation experience. The present study assessed the motivations, expectations, experiences, and self-perceived long-term physical and psychological sequelae of having donated eggs, using a sample of women who donated at a wide variety of clinics scattered across 20 states. The goal was to assess the women's views at a time distal to the actual donation; all of the women surveyed first donated their eggs at least 2 years before completing this survey. Although assessing women's attribution of their current physical and psychological health concerns does not address the actual sequelae of donation, it does provide insight into the types of education that should be provided before donation and suggests issues for follow-up in larger, longitudinal studies.
Materials and methods
All recruitment and survey procedures were approved by the Institutional Review Board of the University of Washington. Two sampling tools were used to recruit participants for this study. The first was an advertisement for participants through posted flyers and advertisements in print and Internet-based media, and the second was a targeted sampling of former donors from an egg donor matching agency based in California which recruited, screened, and matched potential egg donors with recipient candidates nationwide but was not linked to a specific medical clinic. In an attempt to ensure a broad geographic distribution of egg donors throughout the U.S., the researchers posted flyers around colleges and universities in the Pacific Northwest and ran advertisements on the web site Craig's List (http://www.craigslist.org) and in the alternative newspapers LA Weekly, Miami New Times, San Francisco Bay Guardian, San Francisco Weekly, The Stranger, and The Village Voice calling for former egg donors to participate in an online survey. Nineteen egg donors responded to these recruitment tools and participated in an anonymous online survey. In the targeted recruitment of donors affiliated with the egg donor matching agency, paper copies of the study questionnaire were mailed to 298 women who had donated before 2003. Individuals receiving the mailed questionnaire also received a letter describing the intent of the survey and $1.00 as token of appreciation for their time. One hundred six of the packets were returned as undeliverable, which is likely due to outdated contact information that the egg donor matching agency had on file. Excluding the undeliverable mailings, the potential sample size was 192 donors. Of these, 61 egg donors affiliated with the egg donor agency responded to the call for participants, resulting in a survey completion rate of 31.8%. Staff limitations at the egg donor matching agency and funding concerns precluded additional mailings to boost participation in the study. This, as well as the anonymity of the survey tool and the researchers' lack of prior relationship with the potential respondents, may have affected response rate (
In all, 80 women who had donated eggs for the first time at least 2 years before the time of the study completed the study questionnaire between May 2004 and May 2005. The questionnaire had 84 items, including both open-ended and multiple-choice questions. The questions addressed a variety of demographic characteristics of the participants that are commonly included in advertisements recruiting egg donors (i.e., age, height, weight, height/weight proportionality, race/ethnicity, and educational level), how they learned of and became interested in egg donation, details regarding their first egg donation experience, whether they donated eggs more than once, and whether subsequent experiences with egg donation were similar to or different from the first experience. Because this was an anonymous, voluntary survey, comparisons cannot be made between responders and nonresponders. Unless otherwise indicated, all details about the donation experience pertain to the donors' first egg donation.
Responses were entered into an Excel spreadsheet (Microsoft, Redmond, WA) for analysis. Reflecting the purpose of this research, data analysis involved descriptive statistical analyses of multiple-choice and quantitative responses, coding of some qualitative responses for quantitative analysis, and textual analysis of the qualitative material to draw out common themes in the donors' responses. Donor motivations, experiences, and long-term attitudes were each assessed by responses to a series of questions, some of which were forced-choice and others of which were open ended. For example, postdonation satisfaction was gauged by responses to three related questions: a multiple choice question asking the participant to describe the long-term effect of her first egg donation on her life with five possible responses ranging from very positive to very negative, a follow-up question asking her to describe any long-term effects the donation had on her life in an open-ended response, and a more general open-ended question, “Looking back, how do you feel about the egg donation experience now?”.
Results
Demographics
Eighty women responded to this survey. Data from the 19 donors who responded to general advertising did not differ systematically from those of the 61 donors identified through the agency. All results presented are for the combined sample of 80 donors. When they completed the questionnaire, respondents averaged 30.6 ± 4.0 (mean ± SD) years of age. In response to an open-ended question, the majority of the donors identified themselves as white, Caucasian, or European American (73 women or 91.2% of the sample). Although labeling themselves as white or Caucasian, three women indicated that they were, in part, Native American (3.8% of the sample). Two others characterized themselves as Jewish as well as white (2.5%). Four donors identified themselves as Hispanic (5%), and two (2.5%) labeled themselves as Caucasian-Asian or Eurasian. One woman (1.2%) described herself as African American and Native American.
The survey respondents donated eggs for the first time 2–15 years before completing this survey. The earliest first donation was in 1989, and the most recent initial donation was in 2002. More than half (64.5%) underwent their first donation cycle between 1998 and 2002. Most first donations occurred in 1999 (
At the time of their first egg donation, the respondents were between 20 and 32 years of age (mean ± SD, 25.1 ± 3.0 years). Thirty-six of the participants (45.0% of the sample) were students when they first donated, with 11 donors (13.8%) going to school part time and 25 (31.2%) attending full time. Forty-six of the women (57.5%) were employed full time, and 18 (22.5%) were employed part time at the time of their first donation. Fifteen (18.8%) reported being unemployed at the time of their first egg donation. Those employed detailed their occupations in an open-ended response. Donors' occupations included positions in the service, education, and professional sectors, such as wait staff, “barista,” bartender, teacher, teaching assistant, exercise physiologist, medical assistant, tattooist, and mental health case worker, as well as a variety of white-collar administrative positions and a few performers/actors.
Fifty-six (70%) of the women who completed this survey donated eggs more than once, with the number of donations ranging from 1 to 9 (mean, 2.4; median, 2). Most repeat donors underwent the procedure two or three times (Table 1). The length of time between donations ranged from as little as 2 months to as long as 48 months. The most common interval between procedures was 1 year (n = 15). The second most common period of time between donations was 6 months (n = 10). Twenty-three of the repeat donors (41.8%) reported that all of their donations took place in the same geographic area, whereas 32 (58.2% of the repeat donors) said that they had donated in more than one geographic region. One repeat donor chose not to respond to the question on geographic dispersal.
Table 1Number of donation cycles for each respondent.
Most of the women (70.5%) indicated, in response to an open-ended question, that they first learned about egg donation through advertising or articles/reports in print or broadcast media. One quarter of the donors (20 women) specifically noted that their first source of information on egg donation was a college or university newspaper. Three others reported trade papers for the performing arts as the original source of their information. Other women (n = 33) said they first learned of the process from television programming or through advertising or articles in community newspapers or mass-circulation magazines.
After media sources, the next most common first source of information on egg donation was a friend or family member (20% of the sample). Two of the donors (2.5%) learned about egg donation from friends who were experiencing fertility problems and were considering using donated eggs. One had an infertile friend specifically request her help as a donor (although, in the end, this woman donated anonymously and not to her friend). Two women (2.5%) learned of the process through their work in fertility clinics. Two donors (2.5%) did not identify the source of this information.
Motivations to Donate
When asked in an open-ended question why they donated, the women gave a variety of answers, most of which related to their own financial needs and/or their desire to help others (Fig. 1).
Figure 1Percentage of donor sample who reported that their motivations were altruistic, financial, or a combination of the two. In cases in which dual motives were cited, the motive given first is listed first.
Twenty-six women (32.2%) reported that their motivations were based entirely on helping others. Altruistic explanations included the following:“I am truly looking forward to the opportunity to be pregnant and have a child with the person I love. I feel that every woman should have the chance to experience that at least once in her life.” (Donor 4)“My brother is infertile. I wanted to help another infertile couple.” (Donor 30)“I had used a sperm donor to conceive 3 of my children and felt the need to help others.” (Donor 5)
Fifteen women (18.8%) indicated that their motivations were strictly financial:“I needed money.” (Donor 1)“Honestly, I could use the money to pay for school and that is exactly what I used it for.” (Donor 16)
A greater proportion of donors (33 women or 41.2% of the sample) reported that both money and helping others played a role in their decision to donate. Of these, 19 (23.8%) cited financial reasons first, as in the following examples:“…needed money, thought I was helping someone.” (Donor 37)“The money attracted me, initially, to be honest. But, I became more excited about it once I talked to the ‘parents’ and heard their story.” (Donor 46)
Responses from 14 women (17.5%) suggested that their primary motivation for donating was altruism and that financial compensation was a secondary factor:“I thought that it was a wonderful thing to do; and, as a law student, the extra money was nice.” (Donor 10)“I am so fertile and wanted to help couples who desperately wanted children to have a baby. I could not imagine wanting a child so badly but being unable to have one – how unfair! Of course, the payment was also a big factor – used it to pay off my student loans.” (Donor 66)
Four women (5.0%) gave responses that did not fit into any of these categories, and two women (2.5%) did not answer this question.
Whether or not they cited finances as motivating their decision, most of the survey respondents (73.8%) indicated on a Likert scale of 1 (not significant at all) to 6 (very significant) that financial compensation played a significant role in their decision to donate, with 58.8% of the donors labeling remuneration as very significant to their decision. Twenty-five percent of the donors rated financial compensation as relatively insignificant to their decision, with four women (5.0%) indicating that financial incentive was not at all significant to their decision. The 36 women who were full-time or part-time students at the time of the donation were more likely to be financially motivated to become egg donors than nonstudents, with 94.4% of students indicating that financial compensation was a significant factor in their decision to donate eggs, as compared with 56.8% of the 44 donors who were not students.
All of the donors received financial compensation for their donation, although four women did not report the amount of the payment. Because donations spanned a period of approximately 11 years, payments reported by the donors were converted to 2002 U.S. dollars (2002 being the most recent first donation year). Conversions were done using the purchasing power calculator based on the Consumer Price Index through http://www.measuringworth.com/ppowerus/index.php. Reported payments ranged from $1,104 ($1,000 in 1998) to $7,313 ($7,000 in 2000) (mean ± SD, $3,965 ± $1,406). Payments significantly increased over time, averaging $3,586 ± $1,590 for the 38 women reporting their remunerations for donations between 1989 and 1999 and $4,334 ± $1,100 for the 39 women reporting payments for donations between 2000 and 2002 (P=.0185). Compensation varied widely during both time periods, ranging between $1,104 ($1,000 in 1998) to $7,254 ($5,000 in 1989) for the women first donating between 1989 and 1999 and between $2,089 ($2,000 in 2000) to $7,313 ($7,000 in 2000) for the women first donating between 2000 and 2002.
Donors who reported that financial compensation was very significant to their decision to donate (n = 18 or 22.5%) received higher payments on average ($4,453 ± $1,285) than those who said remuneration was irrelevant to their actions ($3,413 ± $3,397; n = 4 or 5%). However, the payment that women received for donating eggs did not reflect the importance that they attributed to compensation. To illustrate, remuneration to women who reported that payment played a very significant role in their decision to donate ranged from $2,007 ($1,700 in 1995) to $7,254 ($5000 in 1989), whereas that for women who said that financial compensation was not significant at all to their decision was between $1,104 ($1,000 in 1998) and $7,313 ($7,000 in 2000).
When asked whether the financial compensation they received was too little, just about right, or too much, a majority of the donors (62.5%) reported that the financial compensation was just about right for their role in the donation. Slightly more than one third of the women (36.2%) reported that their compensation was too little. However, the average compensation between these groups did not differ, with the women who indicated that their financial compensation was just right receiving an average of $3,917 ± $1,383 and those who judged their compensation to be inadequate receiving an average of $,3962 ± $1,486. Both the highest paid ($7,313 [$7,000 in 2000]) and one of the lowest paid ($1,245 [$1,000 in 1993]) donors reported their compensation to be inadequate, demonstrating the complexity of donors' motivations and reactions to donating their ova. Two donors, each of whom received $5,000 (one in 2000 and the other in 2001), reported that their compensation was too high for their role in the process. Eighty-three percent of the women who donated only once rated financial remuneration as important to their decision. In contrast, only 69.6% of women who donated more than once indicated that such compensation was important to their decision to donate.
Expectations Before Egg Donation
Prior Knowledge of Physical Risks
Most of the donors (80%) reported that they were aware of some physical risks associated with the procedures before their first donation. Table 2 provides a summary of the risks the women noted in response to an open-ended question asking what risks they were aware of before they first donated. It is important to emphasize that this table does not enumerate clinically designated risks associated with egg donation; rather, the risks associated with ovum donation listed in this table are those identified by the respondents to this survey with no prompts provided.
Table 2Physical risks donors reported being aware of before their first donation and physical effects the donors reported having experienced during or immediately after the donation.
Risk
Percentage of donors reporting awareness of the risk (n = 80)
Percentage of donors reporting actually experiencing the risk (n = 80)
Ovarian hyperstimulation
33.8
12.5
Infertility/decreased fertility
20.0
1.3
Surgical risk including bleeding/infection
20.0
1.3
Damage to ovary, scarring, torsion, twisting
15.0
2.5
Risks from anesthesia
12.5
3.8
Increased risk of cancer/ovarian cancer/uterine cancer
The proportion of the respondents who indicated awareness of any one of the various physical risks that could be associated with hormone treatment and/or egg harvesting before initiating treatment is surprisingly low. Ovarian hyperstimulation was the most commonly recalled potential risk, and this was noted by only 27 survey respondents (33.8%). Risk of future infertility or decreased fertility and risks from surgery, including bleeding and infection, each were noted by 16 (20%) of the donors. Other possible risks were noted by only a small proportion of the total donor sample.
Most of the women (62.8%) reported on a Likert scale of 1 (very serious) to 6 (very minor) that before donating they viewed the potential physical risks associated with the procedure as minor, with 21.4% of the women evaluating the risks as very minor. A total of 37.1% of the respondents viewed the potential risks as serious, and 11.4% indicated that they perceived the risks as very serious. Although most of the women acknowledged being aware of at least some physical risks associated with egg donation, it is interesting to note that 20% of the sample reported that they did not recall being aware of any physical risks associated with the donation process at the time of their first donation.
Prior Knowledge of Psychological Risks
Most of the women (72.5%) reported that they were aware of some psychological risks associated with egg donation before undergoing the procedure. Only 17 (21.2%) reported on a Likert scale from 1 (very serious) to 6 (very minor) that they thought that the psychological risks were serious before initiating treatment. Table 3 summarizes the responses of the donors to an open-ended question asking what psychological risks they were aware of before donation. Many of the women reported being aware of the possibility that they might develop concern for and/or attachment to their eggs and/or potential or resultant offspring, concern that the donor or resultant child might want a relationship with them in the future, and unease or curiosity about the possible existence of genetic children related to them “out there in the world” (Table 3). Other psychological risks that the donors recalled being aware of before initiating the donation cycle reflected emotional changes related to hormone stimulation and/or stress resulting from the donation process as a whole.
Table 3Donors' awareness of psychological risks before donation.
Risk
Percentage of respondents indicating awareness of the risk before donation (n = 80)
Sense of loss and emotional attachment to eggs and/or children born as a result of the donation
31.3
Regret/mental anguish
11.3
Depression/sadness
10.0
Uneasiness about the possibility of a child “out there” with donor's DNA
8.8
Feeling that resultant child(ren) should have relationship with his/her genetic mother
7.5
Curiosity about the end result of the donation and any possible resultant child(ren)
6.3
Risk that a resulting child might later seek out donor or that donor would want to locate child
5.0
Mood swings
3.8
Desire to back out of donation agreement when time came to harvest eggs
When asked to rate their physical reactions to the egg donation procedures on a Likert scale ranging from 1 (very positive) to 6 (very negative), the donors were almost evenly split on whether they recalled their physical reactions to be positive or negative, with 40 donors (50.0%) responding with ratings on the positive end of the scale and 37 women (46.2%) reporting that their physical responses were on the negative side. (Three donors did not respond to this question.) Although most of the women rated their physical reactions midway between positive and negative (ratings 3 and 4), 14 women (17.5%) rated their physical reactions as positive or very positive, and 13 women (16.2%) rated their reactions as negative or very negative. Women who labeled their physical responses to the treatment as very positive reported either that they experienced no physical reactions to the procedure or that they had slight bloating during the donation cycle. The women who rated their physical reactions to the donation process as very negative also described their reactions as very serious. These reported outcomes are addressed below.
Thirty-six women (45%) reported that they experienced pain from the injections and/or from egg retrieval (Table 2). Although only 2 women listed bloating as a potential physical risk that they recalled being aware of before the procedure, 25 women reported experiencing bloating during the process. Other physical reactions respondents reported experiencing included mood changes and irritability (12 women), ovarian hyperstimulation (10 women), weight gain or loss (9 women), heavy period after treatment (6 women), nausea (5 women), and headache (4 women). Nine of the women (11.3%) reported that they had no physical reactions to the donation regimen.
Most of the women (73.8%) rated their physical reactions to the procedures on a Likert scale of 1 (very serious) to 6 (very minor) as somewhat minor or very minor; but 17 women (21.2%) reported that their physical reactions to the treatment were serious, and six women (7.5%) rated their reactions as very serious. In response to an open-ended question asking what, if any, physical reactions they had to the procedures, two women who rated their reactions as very serious (and very negative as noted above) reported being hospitalized in the days immediately after the procedure, and one woman reported being treated in an emergency room shortly after retrieval. Two of these donors attributed their need for follow-up care to hyperstimulation, whereas the remaining woman said that the care was needed because of severe reactions to medications used during or after retrieval. Another woman who rated her physical reaction as negative and serious attributed subsequent development of a fibroid on the broad ligament of the uterus to the procedure, and a donor who had required in-hospital aftercare associated a fibrous mass in her breast discovered shortly after the donation cycle with the process. Two additional donors reported experiencing severe pain in the days after retrieval. Note again that the attribution of these outcomes to the donation process was made by the donors in response to open-ended questions, and the connection was not necessarily verified by medical practitioners.
Psychological Responses to the Donation Procedures
When asked to rank the emotional reactions they experienced immediately after the donation procedure on a Likert scale ranging from 1 (very positive) to 6 (very negative), 72.5% of donors (n = 58) recalled a positive emotional reaction, 2.5% (n = 2) noted that they had a neutral response, and 18.8% (n = 15) indicated that their immediate emotional reaction was negative. Five participants did not respond to this question. When participants were asked in an open-ended question to describe their immediate emotional response, their responses did not map clearly onto the expected outcomes reported in Table 3 and, therefore, are noted in Table 4. Thirty women (37.5%) recalled only positive psychological reactions, such as excitement or hope, elation or happiness, and pride, 23 women (28.8%) reported that they had no immediate emotional reaction to having donated eggs, and 21.2% (n = 17) recalled only negative reactions, such as mood swings, crying hysterically, dislike for injections, and anger at treatment by medical staff. A small number of participants (n = 5, 6.3%) described experiencing both positive and negative emotional responses immediately after donation. Bivariate correlation analyses did not yield any significant correlations between participants' age, financial compensation received, or the number of times they donated and their immediate psychological reactions to having donated.
Table 4Psychological reactions donors reported experiencing immediately after the donation.
Reaction
Percentage of donors reporting the reaction (n = 80)
None
27.5
Excited/hopeful/anxious that the donation would be successful
17.5
Elated/happy/joyful
16.3
Mood swings
10.0
Pride in doing something to help a couple build a family
10.0
Relief that the process was over
6.3
Crying hysterically
3.8
Curiosity about the end result of the donation and any possible resultant child(ren)
2.5
Dislike for injections
2.5
Anger at medical treatment or the way they were treated by medical staff
When asked to rank on a Likert scale of 1 (perfectly) to 6 (not at all) how their overall experience of the egg donation process compared to their expectations, most of the women surveyed (80.0%) reported that their experience matched their expectations to some degree, with 62.5% of the women claiming a perfect or nearly perfect match between expectation and reality. Sixteen women (20.0% of the sample) reported that the reality of egg donation differed from their expectations to some degree. The more common ways in which reality and expectations differed, which participants detailed in response to an open-ended follow-up question, are summarized in Table 5. It is notable that three of the differences recalled by respondents indicated that the actual process of donation was more positive than they had expected it would be. Four of the five women who said they did not expect the physical complications that resulted from the donation process had reported, in response to the earlier question, being aware of only a limited number of risks before beginning the donation process, such as hyperstimulation, unintended pregnancy, or moodiness due to hormone treatment.
Table 5Dimensions on which the reality of egg donation differed from the donors' expectations.
Dimension
Percentage of sample endorsing the dimension (n = 80)
Less physically and/or emotionally taxing than anticipated
8.8
More physically and/or emotionally taxing than expected (bloating, discomfort, pain, difficulty of self-injection)
8.8
Did not expect physical complications (hyperstimulation, fibroid in breast, pain at injection site, reaction to anesthesia)
6.3
More time-consuming than anticipated
6.3
Felt disrespected by medical staff
5.0
Process was more rewarding than anticipated
2.5
Risks were downplayed or not explained by medical staff
2.5
Felt better informed about the process than expected
Self-Reported Long-Term Physical or Psychological Effects of Donation
At the time the survey was conducted, 13 of the women (16.3%) were experiencing physical symptoms that they attributed to the donation process. Three former donors (3.8% of the sample) attributed current concerns regarding their own impaired fertility to having donated eggs. Another three were currently experiencing ovarian cysts or fibroids that they linked to the donation process. Two women maintained that their body weight was currently higher owing to the donation procedure, and two others reported that they were experiencing abdominal pain, which they attributed to having donated eggs.
Sixteen women (20.0%) reported that the donation process resulted in lasting psychological effects. Seven of these women (8.8% of the whole sample) indicated that they experience ongoing curiosity about the outcome of the procedure and any child(ren) that may have resulted from the process. Three women reported an ongoing sense of pride that they had helped an infertile couple establish a family. Two donors indicated that they had developed ongoing concerns that a child that they bear and raise might, by chance, meet and develop a relationship with her donor offspring.
Long-Term Attitudes Toward Egg Donation
As was noted earlier, the egg donors who participated in this study had donated for the first time between 2 and 15 years earlier. In response to an open-ended question (“Looking back, how do you feel about the egg donation experience now?”), the majority of donors (66.2%) reported long-term postdonation satisfaction, although 13.8% reported long-term negative feelings about having donated, and 12.5% reported having both positive and negative feelings about having donated. Five donors reported feeling neutral about having donated, and one donor did not respond to the question. Of the 59 donors who indicated that financial compensation was significant to their decision to become donors, 61% had long-term positive attitudes toward having donated, compared with 84.2% of their counterparts, who reported that financial compensation was less significant or insignificant to their original decision to become an egg donor.
For donors who felt positively about having donated, typical responses included the following:“I feel it was wonderful and know/hope that I was doing a positive thing for a less fortunate couple. I hope it worked out for them and the child is healthy as well as the parents.” (Donor 69)“It was a great thing to do for someone else that I could feel good about and the money made the discomfort worth going through.” (Donor 28)
For those who had lasting negative feelings about having donated, donors expressed frustration over the anonymity of the process, fears about the relationship between egg donation and fertility problems, and feelings that the inconvenience and physical risks of egg donation were not worth the compensation. For those who expressed both positive and negative feelings about having donated, most had mixed feelings about weighing the risks and benefits of egg donation. For example:“I am happy I donated my eggs. I don't have any feelings of loss or regret at all. I'd love to know the recipients involved and see their children, but understand that I signed those rights away a long time ago. In some ways, I do feel a little ‘left behind’ in the process. I made a conscious decision to do this, so I don't feel ‘used’ per se, but I do wish that all communication with the recipients and the program hadn't ended the second I was handed a check.” (Donor 18)“The older I get, the more I know I did a wonderful thing. The experience was very positive but the older I get, I can't help but wonder if I've put my own fertility at risk.” (Donor 44)
Discussion
This study examined the motivations, expectations, and experiences of 80 women who donated eggs one to nine times between 1989 and 2002 at clinics in 20 states across the U.S. This sampling strategy assured that the responses received were not dependent upon the procedures or activities of a specific clinic, although 76.2% of participants (n = 61) donated through a single egg donor matching agency, so it is possible that these participants' expectations of the donation process may have been shaped by any preparatory materials provided by that particular agency. The questionnaire was targeted toward women who first donated at least 2 years before data collection. Our goal was to avoid any immediate postdonation reactions to the procedure and to allow time for the respondents to have assessed the longer-term physical, psychological, and social effects of the donation. Clearly, achieving this goal came at a cost, as participants in the study were asked to reflect upon events in their lives that occurred years earlier. Their recall of their motivations and the full range of possible side effects and risks covered during predonation counseling may have been imperfect, because the ways in which individuals narrate the events in their lives change over time (
). Nevertheless, it is important to understand how women construct and interpret their role in egg donation years afterward.
Motivations to Donate
Our respondents' motivations for donating their ova were complex and intertwined. The women who responded to this survey, like those queried by other researchers (
), cited both altruistic and financial reasons for their donations. The respondents' comments suggest that an individual donor's perceptions of the benefits of donating may be fluid over time. Some donors initiated the process for money but found that concern for the infertile couple became more significant to them as the process unfolded. Others emphasized that financial gain alone cannot compensate for the difficulties endured during the donation process; a donor must recognize that they are providing an important service to make the donation worthwhile. The degree to which respondents' reported motivations to donate were influenced by social desirability effects cannot be definitively determined. Yet it is important to consider that the donors' responses may have been influenced by their desire to portray themselves in a positive, selfless, and gender-appropriate manner. Rene Almeling (
) has argued that egg donor agencies in the U.S. encourage prospective donors to represent themselves in an altruistic manner because altruistic motivations are read by agencies to be more gender-appropriate than being financially driven to donate; thus, those who cite altruistic reasons are deemed better candidates by agencies.
Altruism alone is not enough to attract most donors, however. This is apparent in the limited number of women who volunteer to donate in regions of the world where payment is severely limited or forbidden, and it is apparent in the accounts of the U.S. egg donors surveyed here. The vast majority of our respondents noted that the prospect of financial compensation was significant to their willingness to become egg donors; but the amount of payment that donors received did not correlate with the importance that they attributed to the financial compensation they would receive. Some donors who claimed that money was extremely important to their decision received compensation at the lower end of the remuneration scale, whereas some donors who claimed payment was of little relevance to them were among the highest paid in this sample. At the same time, donors' perceptions of the financial value on their participation in egg donation varied considerably, with both the highest- and lowest-paid donors reporting that they were undercompensated and two donors reporting that they were overcompensated. Nevertheless, the majority of the donors were satisfied with the financial remuneration that they received. Clearly the intermingling of donor motivations is highly complex, and one should not expect that simply offering more money or simply arousing altruism by educating potential donors about the plight of the involuntarily childless will yield more donations.
Previous research has suggested that remuneration may be more important to young college students who may face educational debt and limited income (
). Both ethicists and clinicians have raised concerns about the motivations of a financially vulnerable potential donor pool, such as college students (
), and data from the present study indicate that these concerns may be well placed. For example, in the present sample, donors who were students at the time of the donation were more likely to cite financial reasons for becoming egg donors than those who were not students at the time, with 94.4% of students indicating that financial compensation was a significant factor in their decision to donate eggs, as opposed to 56.8% of nonstudent donors. In addition, a quarter of the donors reported that they first learned of ovum donation through university or college newspapers, which indicates that advertising techniques used by clinics and egg donor matching services, which often rely on financial incentives, may have captured the attention of these would-be donors.
) reported that repeat donors were more likely to be financially motivated to participate in egg donation than one-time donors. This finding was not supported here. In the present sample, women who donated more than once put somewhat less stake in the importance of payment for their participation in egg donation, with 69.6% of repeat donors rating the importance of payment as high or very high, as opposed to 83.3% of one-time donors. It is possible that donors entered into the process with different expectations about the level of compensation they would receive or differing levels of financial need. Any contrast between expected and actual return or need and remuneration might explain, at least in part, the differing levels of satisfaction women reported with the actual compensation they received. More systematic research into the motivations and importance of financial compensation to single-time and repeat egg donors is required to evaluate the role of altruistic and financial motivations in repeat donation.
Predonation Awareness of Risk and the Experience of Egg Donation
Although most surveyed donors reported being aware of some physical risks associated with egg donation, a rather large and troubling minority (20%) of the respondents reported that they were unaware of any possible physical risks before initiating their first donation cycle. This reported lack of awareness of risk is difficult to interpret given the length of time that elapsed between predonation counseling and recall of information for this survey. Recall and/or reporting health-related behaviors is often inaccurate (see, e.g.,
. Prospective research in which risk awareness can be measured both at the time of donation and years later is needed to determine the extent to which recall bias may play a role donors' recollections of their risk awareness.
The majority of the donors (62.8%) reported that they perceived the physical risks they faced as egg donors to be minor before donation, and most (73.8%) reported that their actual physical reactions to the procedures were minor. However, the potential risks that the donors acknowledged being aware of before their first donation cycle were not well-matched to the physical side effects that they actually experienced as donors. For example, only a small minority (8.8%) of the sample reported predonation awareness of pain from injections or egg retrieval, whereas nearly half (45%) of the respondents indicated experiencing notable pain as a result of these procedures. Only one third of donors reported awareness of the risk of ovarian hyperstimulation, a serious side effect that that was actually experienced by 12.5% of the current sample. There are a number of possible explanations for this apparent disconnect between awareness of physical effects before donation and actual experiences during the donation process. As noted above, participants' recall of the medical risks of the procedure of which they had been informed may not have been accurate. Given that participants donated eggs between 2 and 15 years earlier, the potential for forgetting and/or biased recall must be seriously considered. It is also possible that donors did not categorize potential physical responses about which they were told before the donation as risks per se but assigned them more benign labels, such as “side effects.” Or, in their drive to reap the positive benefits of serving as an egg donor, the donors may have consciously or unconsciously overlooked mention of the physical risks they were undertaking. Of course, this disconnect may also reflect a lack of adequate counseling of prospective donors regarding the potential risks involved in egg donation. Additional research is needed on the efficacy of various means of communicating to donors the short-term physical side effects that may accompany ovarian stimulation and egg retrieval, as well longitudinal research to assess the accuracy of self-reported knowledge of physical risks associated with egg donation.
There was a similar disjunction between the psychological risks the donors recalled being aware of before the donation and the actual psychological sequelae the donors reported. In this case, however, the risk awareness reflected more challenging outcomes than the women actually experienced. Donors reported knowledge of a number of possible long-term psychological stressors that could result from egg donation, with many noting the potential for experiencing a sense of loss or attachment to their gametes. The emotional reactions the donors reported experiencing immediately after the donation ranged from no emotional reaction at all to being happy and hopeful for the recipient couple to experiencing dramatic mood swings. Of the 20% of donors who reported lasting psychological effects they attributed to having donated, most said it was expressed as curiosity about the outcome and any children resulting from the egg donation. Donors reported that predonation counseling they received about the potential psychological impact of egg donation addressed such long-term feelings more than it addressed the immediate or short-term emotional reactions they experienced. For instance, only 2.5% of donors noted that their immediate emotional reaction to having donated was expressed as curiosity about the end result of the donation, but in reflecting upon the long-lasting physical and psychological impact of egg donation, 8.8% of donors mentioned that they had ongoing curiosity about the outcome of their donation and frustration about the anonymity of the process. Kalfoglou and Gittelsohn (
) also reported this as a common desire among anonymous egg donors. The results of these studies suggests that egg donors' degree of curiosity about the outcome may be fluid over time and that clinics and egg donor matching agencies might consider the possibility of standardizing the delivery of nonidentifiable information regarding outcomes of anonymous egg donation, particularly if a donation resulted in a pregnancy and/or live birth. Although such a procedural change might entail some logistical difficulties, this might alleviate some of the anxiety and curiosity that some participants reported feeling years after having first donated. Of course, such an arrangement would need to be agreed upon with the recipient couple before the initiation of the egg donation, and additional research would be necessary to assess the logistical and emotional complexities of opening the lines of communication between egg donors, recipient couples, and any children resulting from the egg donation.
), the majority of donors in this study reported satisfaction with having been egg donors and a high willingness to donate again. Donors who indicated that financial compensation was significant to their original decision to become donors were somewhat less likely to report long-term positive attitudes toward having donated than their counterparts for whom financial compensation was less significant or insignificant to their decision to donate their eggs.
Most donors reported that their experience of egg donation met their expectations. These findings suggest that clinicians and counselors are largely doing an adequate job of preparing their donors for what to expect, and that most donors retain positive feelings about their experience. Any negative discrepancies between expectations and reality could largely be avoided through additional educational efforts on the part of the counselors and clinicians who recruit and prepare donors for the process. For example, four of the five women who said they did not expect the physical complications that resulted from the donation process reported being aware of only limited risks before beginning the donation process, such as hyperstimulation, unintended pregnancy, or moodiness due to hormone treatment. More comprehensive training on potential risks might eliminate such discrepancies in expectations.
Despite the majority of donors reporting that egg donation was a positive experience for them, some reported dissatisfaction with some aspects of their clinical experience, with the physical discomforts of egg donation, and with the financial compensation that they received (see also Kafloglou and Gittelsohn [
]). The problems with the clinical interactions may be the easiest to ameliorate. Efforts should be increased to treat egg donors in keeping with their importance as a critical link in the infertility treatment process. Attention should be paid to clinic entrances and waiting and recovery areas used for egg donors. The desire to keep donors and recipients separate in anonymous donation situations is clear and understandable; but facilities assigned to donors should not project the idea that the donors are of only secondary importance or that, like others who deliver clinic supplies, they are to use the back entrance.
In terms of the long-term physical sequelae, a significant minority of surveyed donors reported serious physical conditions, including their own impaired fertility, ovarian cysts, fibroids, and chronic pelvic pain, which they attributed to having donated eggs. Of course, there is no way to determine the causality of their present symptoms with any certainty, but their reports do suggest the need to maintain contact with donors over a longer period. Such contact would allow for the needed accurate assessment of the longer-term health risks of ovarian stimulation in healthy young women. Although there has been speculation on links between egg donation and long-term health risks like ovarian, endometrial, and breast cancers, ovarian cysts, fibroids, thyroid disorders, and pelvic pain, the results of existing medical research has been inconsistent in drawing causal links between egg donation and these health risks (
Risk of benign gynaecological diseases and hormonal disorders according to responsiveness to ovarian stimulation in IVF: a follow-up study of 8714 women.
). To our knowledge, no studies have systematically analyzed whether there is a causal link between ovarian stimulation for egg donation and impaired fertility. The few studies that have tracked the linkages between fertility drugs used in IVF and egg donation and the development of health problems have been limited by small sample sizes and short time frames of analysis, and they have mainly tracked IVF patients' rather than egg donors' long-term health (
). Additional research is indicated in this area, and careful tracking of donors' postdonation health over a period of many years would provide important insight into the relationship between potential risks of egg donation and physical manifestations of those health risks.
In conclusion, this research provides a comprehensive look at the motivations, expectations and experiences of 80 egg donors across the U.S. Although this is a relatively small-scale study that is limited by the incalculable influence of donor recall bias, it is the first to query donors from a variety of clinics nationwide long after their first donation experience. These data can inform both clinical practice and future large-scale and longitudinal studies of egg donors in the U.S. The results suggest that the current systems for recruiting and educating egg donors are working well for most women but that there are arenas in which improvements can be made. Education and counseling for women initiating the donation process can be improved to ensure that they truly understand both the potential side effects of the treatment and the possible long-term consequences. Procedural changes can be implemented to assure that donors sense that they are important and respected contributors to the treatment procedures and efforts made to track and assess their well-being once egg harvesting is completed. These data suggest that donors' curiosity and concern about any offspring that might have resulted from their donation might increase over time. Clinics and agencies working with egg donors might work toward developing a system through which nonidentifiable information regarding the outcomes of anonymous egg donation might be made available to the donors, particularly if a donation resulted in a pregnancy and/or live birth. Keeping anonymous donors better informed could alleviate some of the anxiety and curiosity that egg donors reported feeling years after having first donated. Longitudinal analysis is needed to more accurately assess many of the issues raised by this research. Such work could assess the motivations and importance of financial compensation to single-time and repeat egg donors and evaluate the role of altruistic and financial motivations in repeat donation. Longer-term follow-up of donor health is necessary to determine whether the long-term physical consequences that a small number of participants in this study attribute to their past donation are truly related to the donation. Clear understanding of the risks and benefits of exposing healthy young women to hormonal ovarian stimulation and egg harvesting procedures requires the development of procedures that track donors' physical and mental health over a period of many years after donation.
Acknowledgements
The authors thank Dr. Judith A. Howard, Dr. David G. Allen, and two anonymous reviewers for their comments and advice on earlier versions of this article.
References
Centers for Disease Control and Prevention
2005 assisted reproductive technology (ART) report: national summary.
The Centers for Disease Control and Prevention,
Atlanta2007
Risk of benign gynaecological diseases and hormonal disorders according to responsiveness to ovarian stimulation in IVF: a follow-up study of 8714 women.
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