Abstract
OBJECTIVE
To examine compliance with ASRM's ethical guidelines regarding trait-based payment variation, presentation of risks and minimum recruitment age.
DESIGN
In June 2010, we systematically examined 207 websites, of which 102 were egg donor agency or IVF clinic websites that both recruited online and displayed compensation amounts.
SETTING
The Internet
MAIN OUTCOME MEASURES
Mention of increased payment for particular donor traits, recruitment age below 21, noting risks to donors.
RESULTS
Of the 102 sites, considerable numbers were non-compliant with ASRM's guidelines that prohibit varying compensation based on a donor's traits (34%), recommend an age of 21 or above (41%) and presentation of risks alongside compensation (56%). Trait-based payment variation was associated with being an agency rather than a clinic (p<.001), location in the West (p<.001), not being endorsed by ASRM or SART (p<.001), and referring to ASRM's guidelines about compensation (p<.001). Of sites mentioning traits, prior donation success was the most commonly paid for trait (64%).
CONCLUSION
Our data, the first to systematically analyze agency and clinic websites reveal that a large proportion do not follow ASRM's guidelines. These data have critical implications for policy, practice and research, suggesting needs for consideration of possible changes in guidelines, and/or improvements in compliance and monitoring by ASRM or others.
Keywords: egg donor agency, financial compensation of oocyte donors, egg donor compensation, commodification of egg donors, ethics, gamete donation
INTRODUCTION
Debates are continuing to evolve concerning the compensation provided to women for donating oocytes, but few data exist concerning actual practices. Egg donation remains an important component of assisted reproductive technology, yet doctors and scholars continue to argue whether compensation should be allowed at all, and if so, what sums are too high, whether to standardize or cap payment amounts, as well as what exactly is being purchased (i.e. the donor's service vs. the eggs themselves).(1,2) These issues are widely reported in the media including Newsweek (3), The Economist(4) and The New York Times,(5) but scant data has been published on the practice of donor compensation in this country.(6)
Approaches to regulating these practices vary between countries. In the United States, the fertility industry remains “free market” and the American Medical Association (AMA) looks to professional societies such as American Society for Reproductive Medicine (ASRM) to essentially self-regulate providers of assisted reproductive technology (ART).(7) In 2007 ASRM issued guidelines to affirm that, “financial compensation of women donating oocytes for infertility therapy...is justified on ethical grounds”(8) and then issued a series of guidelines meant to suggest appropriate practice parameters. Compensation for egg donation is believed to be important because without it, the supply of gametes to treat infertility may dwindle and the rights of the donor to receive due compensation may be violated. There are even arguments that there shouldn't be the current ASRM guideline which suggest a $10,000 ceiling on egg donor compensation. Indeed, a recent class-action lawsuit was filed against the American Society for Reproductive Medicine (ASRM), the Society for Assisted Reproductive Technology (SART) and the Pacific Fertility Center for alleged “price fixing” by suggesting an upper limit on amounts of compensation.
The Internet, in particular, is an extremely important forum for egg donor recruitment,(9) as it is for medical research recruitment in general;(10) however, its role in recruiting egg donors remains unknown. Only two studies have systematically considered the Internet in regard to egg donor recruitment – Luk and Petrozza examined compensation differences by region,(11) Holster looked at donor qualifications, donor databases, website appearance and compensation amounts,(12) and Johnson investigated anonymity policies.(13) But several issues have not been addressed, and we thus set out to do so, specifically to: 1) verify compliance with ASRM's published guidelines on trait-based payment among both clinics and agencies, 2) detail the types and frequency of traits desired, 3) examine disclosure of risks and age minimums, and 4) follow the realistic steps a prospective donor might take through an online search engine that includes both agencies and clinics she might consider.
MATERIALS AND METHODS
We systematically reviewed American fertility clinics and donor matching agencies involved in the recruitment of egg donors by analyzing their websites. To simulate the steps that a prospective egg donor might take to find donation opportunities, we conducted an online search through Google™, entering the term “egg donation,” in June 2010.
As shown in Table 1, we collected a list of 414 websites from within the first 300 results returned from Google. Within the first 20 results, a large health directory website (www.ihr.com) appeared, as did the Society for Assisted Reproductive Technology (SART's) and ASRM's websites. Therefore we included all clinic and agency websites listed on these three sites, and removed any duplicate site that appeared both on one of these three sites, and within the first 300 hits of the search results. We also eliminated sites that were not directly related to the recruitment of egg donors, such as news articles and informational websites.
Table 1.
Recruitment Websites Surveyed
| Relevant Web Hits for “Egg Donation” | 414 |
| Sites Systematically Assessed (50%) | 207 |
| Fertility Clinics or Agencies | 194 |
| Actively Recruits Online or via Phone | 128 |
| Displays Compensation (total sample) | 102 |
Three coders independently read a randomly selected sample of websites to familiarize themselves with the website content and develop a systematic coding manual. Afterwards, every second website was selected from the master list, totaling 207. Out of these 207 sites, each one was assigned to two coders for analysis. Each coder examined the websites independently for qualitative and quantitative data and compared results, discussing ambiguities in the coding to arrive at a consensus. In this review of 207 sites, we removed 13 sites that were not egg donor agencies or clinics, such as egg banks, research facilities and affiliate networks. For the remaining 194 websites, we coded 6 broad categories:
Background information: clinic versus agency; and geographic region of the country.(14)
Donor Eligibility Restrictions: minimum and maximum age for participation; minimum education requirements.
ASRM Endorsement: its endorsement by ASRM (agency) or membership in SART (clinics); whether it refers to ASRM's guidelines when discussing compensation.
Commodification of Donor Traits: whether a site mentioned desirable donor traits; if so, what they were and did they compensate more for them.
Disclosure of health risks: any mention of short-term health risks, (e.g. Ovarian Hyperstimulation Syndrome [OHSS])(15) or long-term health risks (e.g. risks to future fertility via severe infection or ovarian torsion and tissue necrosis)(16,17,18)’.
We used three categories to describe sites in terms of how they mentioned compensation for donor traits: (1) no mention; (2) explicitly paying more for certain traits; (3) only mentioning traits as “preferred” or “in demand” (i.e. but not stating explicitly that these traits would receive more compensation). We captured the frequencies of the binary website characteristic across these three compensation categories, assessed the strength of association in each cross tabulation, and used a logistic regression to compare sites that did not mention traits to those that paid more for traits, as well as sites that did not mention traits to those that did mention traits. We did not obtain Institutional Review Board (IRB) approval, as we did not collect data concerning any human subjects and assessed only publicly available websites. The study was not funded, and we have no conflicts of interest.
RESULTS
As seen in Table 1, of the 194 clinic and agency sites examined, only 102 (53%) actively recruited donors online (i.e. provided a registration form or a number to call) and displayed compensation amounts. As seen in Table 2, of these sites, 34% explicitly mention paying donors higher compensation for particular traits. An additional 15% discuss traits as “preferred” or “in demand,” and 51% did not mention donor traits.
Table 2.
Characteristics of websites by their mention of desired egg donor traits (n = 102)
| Ways Donor Traits Are Mentioned | Comparison Between Ways Donor Traits Are Mentioned | |||||||
|---|---|---|---|---|---|---|---|---|
| Characteristics of Websites | Total SampleA No. (%) | No mention of traits | Explicitly pays more for traits | Mentioned only as “preferred” or “in demand” | No Mention vs. Pays MoreB, OR (95% CI) | P Value | No Mention vs. All OthersC, OR (95% CI) | P Value |
| Total Sample | 102 (100) | 52 (51) | 35 (34) | 15 (15) | ||||
| Organization Information | ||||||||
| Type | ||||||||
| Clinic, No. (%) | 51 (50) | 40 (78.4) | 5 (9.8) | 6 (11.8) | 20.00 (16.36-62.89) | <.001 | 11.82 (4.67-29.94) | <.001 |
| Agency, No. (%) | 51 (50) | 12 (23.5) | 30 (58.8) | 9 (17.6) | ||||
| West coast vs. rest of the country D | ||||||||
| Northeast, South, Midwest, No. (%) | 64 (67) | 43 (67.2) | 10 (15.6) | 11 (17.2) | 2.87 (1.73-4.77) | <.001 | 2.25 (1.41-3.60) | <.001 |
| West coast / Pacific, No. (%) | 32 (33) | 8 (25.0) | 21 (65.6) | 3 (94) | ||||
| Regulatory Endorsement | ||||||||
| SART or ASRM approval | ||||||||
| Approved, No. (%) | 78 (76) | 47 (60.3) | 20 (25.6) | 11 (14.1) | 7.05 (2.26-22.03) | <.001 | 5.76 (1.95-17.04) | <.002 |
| Not Approved, No. (%) | 24 (24) | 5 (20.8) | 15 (62.5) | 4 (16.7) | ||||
| Does site reference ASRM guidelines on compensation? | ||||||||
| Refers to ASRM, No. (%) | 27 (26) | 6 (22.2) | 17 (63.0) | 4 (14.8) | 0.14 (0.05-.41) | <.001 | 0.18 (.07-.50) | <.001 |
| No mention of ASRM, No. (%) | 75 (74) | 46 (61.3) | 18 (24.0) | 11 (14.7) | ||||
| Recruitment Requirements for Donation | ||||||||
| Age Minimum | ||||||||
| 21-22, No. (%) | 56 (59) | 33 (58.9) | 16 (28.6) | 7 (12.5) | 2.34 (0.94-5.84) | <.07 | 2.30 (1.00-5.30) | <.003 |
| 18-20, No. (%) | 39 (41) | 15 (38.5) | 17 (43.6) | 7 (17.9) | ||||
| Education Minimum | ||||||||
| No mention, No. (%) | 80 (78) | 47 (58.8) | 22 (27.5) | 11 (13.8) | 5.56 (1.76-17.52) | <.003 | 4.84 (1.63-14.44) | <.005 |
| Has minimum requirement, No. (%) | 22 (22) | 5 (22.7) | 13 (59.1) | 4 (18.2) | ||||
| Risks | ||||||||
| Short-term risks discussed | ||||||||
| Yes, No. (%) | 45 (44) | 21 (46.7) | 19 (42.2) | 5 (11.1) | 0.57 (0.21-1.36) | NS | 0.734 (.34-1.61) | NS |
| No, No. (%) | 57 (56) | 31 (54.4) | 16 (28.1) | 10 (17.5) | ||||
| Psychological/emotional risks discussed | ||||||||
| Yes, No. (%) | 23 (23) | 14 (60.9) | 6 (26.1) | 3 (13.0) | 1.78 (0.61-5.20) | NS | 1.68 (.65-4.33) | NS |
| No, No. (%) | 79 (77) | 38 (48.1) | 29 (36.7) | 12 (15.2) | ||||
| Risks to future fertility acknowledged | ||||||||
| Yes, No. (%) | 8 (8) | 2 (25.0) | 6 (75.0) | 0 (0) | 0.19 (0.04-1.02) | <.053 | 0.29 (.06-1.53) | NS |
| NoE, No. (%) | 94 (92) | 50 (53.2) | 29 (30.9) | 15 (16.0) | ||||
NOTES
For some website characteristics, the data was not discussed on all websites, reducing the sample below 102
Binary regression analysis comparing sites that do not mention donor traits and those that explicitly pay more for them
Binary regression analysis comparing sites that do not mention donor traits to those that do
Excludes six sites that had a National presence in multiple regions around the country
“No risks acknowledged” refers to both sites that do not mention future fertility risk as well as sites that discuss it but assert that no risk exists
As seen in Table 3, of the 50 websites mentioning traits, 80% mentioned prior donation success, and 64% paid more for it; 42% mentioned education level, and 18% paid more for it; 34% mentioned ethnicity, and 12% paid more for it; 28% mentioned creative or athletic ability, and 12% paid more for it; 16% mentioned physical appearance, and 4% paid more for it; only 8% mentioned standardized test scores and 2% paid more for it.
Table 3.
Types of Donor Traits and Mention of These On Websites (n=50)
| Desired Donor Trait | Not Mentioned | Paid more for | “Preferred” or “In Demand” |
|---|---|---|---|
| Prior Donation Success, No. (%) | 10 (20) | 32 (64) | 8 (16) |
| Ethnicity, No. (%) | 33 (66) | 6 (12) | 11 (22) |
| Test Scores, No. (%) | 46 (92) | 1 (2) | 3 (6) |
| Education Level, No. (%) | 29 (58) | 9 (18) | 12 (24) |
| Physical Appearance, No. (%) | 42 (84) | 2 (4) | 6 (12) |
| Creative/Athletic Ability, No. (%) | 36 (72) | 6 (12) | 8 (16) |
As shown in column 1 of Table 2, clinics and agencies were equally represented among websites that recruited donors online and presented compensation information (n = 51 for each). Of these sites, 24% were not SART or ASRM approved, and 33% were in the West. Of the websites, 74% made no mention of ASRM's ethical guidelines on financial compensation to egg donors, 41% accepted donors under 21, and 22% had a minimum educational requirement to donate (high school or above). Of websites, 56% did not discuss any short-term risks (e.g. OHSS, infection or hospitalization), 77% did not mention possible emotional or psychological risks of egg donation, and 92% did not acknowledge any possible risk to future fertility (e.g. damage to the ovaries).
Websites that explicitly paid more for certain traits were more likely than those that did not mention traits to be agencies (OR=20.0, p<0.001), non-ASRM/SART approved (OR=07.05, p<0.001) and based in the West (OR=2.87, p<0.001). They were also more likely to refer to ASRM's ethical compensation guidelines (OR=0.14, p<.001), to have a minimum education requirement to donate (OR=5.56,p=0.003), and as trends, to recruit donors below 21 years of age (OR=2.34,p=.07), and not to acknowledge possible risks to a donor's future fertility (OR=0.19, p=.053).
As seen in Table 2, sites that showed any trait-based preference (either as “in demand” or explicitly paying for them) were more likely than those sites that did not mention traits to be agencies, non-ASRM/SART approved and based in the West. They were also more likely to refer to ASRM's ethical compensation guidelines and to recruit donors below 21 years of age.
DISCUSSION
This study, the first to systematically analyze trait-based compensation among websites of egg donation agencies and clinics, indicates that many agencies and clinics do not fully comply with ASRM's guidelines on financial compensation of oocyte donors.
ASRM guidelines on compensation are meant, in part, to address the ethical concerns of compensating for egg donation. These concerns include the possible exploitation of donors and the devaluation of personhood by “commodifying” human life. ASRM's guidelines address the concern of commodification of human life by stating that compensation should reflect the “time, inconvenience, and discomfort” associated with the oocyte donation process, which should be “distinguished from payment for oocytes themselves..., [and] to avoid putting a price on human gametes or selectively valuing particular human traits, compensation should not vary according to...the outcome of prior donation cycles, or the donor's ethic or other personal characteristics.”
However, our study found that 49% of websites violate ASRM's guidelines’ intent to “avoid...selectively valuing particular human traits.” Specifically, 34% of websites offer to pay donors higher compensation for certain traits, clearly deviating from ASRM's principle of structuring compensation based on the time, inconvenience and discomfort of egg donation, and avoiding payment for eggs themselves, and an additional 15% of sites mentioned certain traits only as “preferred” or “in demand.”
The most commonly preferred trait, prior donation success, does not follow ASRM's guideline to avoid compensation based on “the number or outcome of prior donation cycles.” While working with past donors can achieve recruitment and screening efficiencies for clinics and can enhance a donor's safety by referencing her history of stimulation response, paying donors a premium for having previously donated does carry some unique ethical concerns: not only does it selectively value fertility as a trait, but it also incentivizes donors to repeat the procedure. For example, anecdotally, some websites increased their payment to donors by $500 for each successful prior donation. Considering ASRM recommends limiting a woman's total donation cycles to 6 in her lifetime, in part to reduce potential health risks, this practice may create “undue influence and exploitation,” which ASRM seeks to avoid when “structur[ing] the provisions of incentives.”
Paying premiums for the desired traits related to personal characteristics that reflect professional and social aspirations raises concerns including fears of eugenics, potential social inequities related to genetics and parents potentially placing undue expectations on children.(19) However, paying a premium for characteristics such as ethnicity is a different story, since it is completely understandable that parents often would want children to be of the same race as them. When an infertile couple uses an egg donor as opposed to adopting a child, the infertile couple can, if they desire, remain private about the nature of their conception if the child resembles them. Additionally, certain ethnic groups may be less inclined to donate and in those cases, paying more for such an ethnic background may be inevitable. Such an increase in payment would, theoretically, help address the likelihood of a dearth in egg donors for infertile couples of that ethnic background.
Paying more for behavioral or subjective traits such as cognitive, physical or artistic ability also reinforces inaccurate knowledge about genetics. While geneticists have determined that cognitive ability has a substantial genetic component,(20) traits are nonetheless still not linked to one gene as in Mendelian genetics.(2) Donor eligibility requirements also reflect trait selection. The 22% of sites with education requirements were more likely to pay premiums for traits. This practice underscores that pedigrees, as opposed to reproductive services, are indeed being purchased, and it may present additional concerns of discrimination, since screening out less educated donors prevents certain groups of women from the option of even participating in egg donation.
To address concerns of exploiting donors, ASRM guidelines state, “to discourage improper decisions to donate oocytes,” donors should, “receive accurate and meaningful information on the potential physical, psychological, and legal effects of oocyte retrieval and donation.”(8) Accordingly, the guidelines suggest, “limit[ing] donors to those who are 21 or older,” and ensuring, “advertisements for donors [that] are accurate and responsible...[such that] if financial...benefits are noted...the existence of risks and burdens also...[are] acknowledged.”(8)
Our data presents only websites that indicated financial benefits and found that most did not present risks, either short-term (56%), long-term (92%) or psychological/emotional (77%). Presumably, clinicians discuss risks in an informed consent process prior to initiating the procedure; however research indicates that individuals make risk/benefit decisions based on their first impressions, which may often occur on websites.(9) While the AMA has issued guidelines concerning certain aspects of online health information,(21) these guidelines address how conventional patients, who seek medical care for their own health benefit, should be informed. In contrast, oocyte donors undergo medical treatment and receive no medical benefit but instead a financial benefit. As such, oocyte donors face a different risk-benefit decision with different ethical considerations, and thus this population may benefit from guidelines that address their unique situation. Particularly problematic with the disclosure of egg donation's long-term risks is that no longitudinal studies exist tracking this population's health. (22) Current information on long-term risks is unclear: one study found the incidence of short-term major complications (some of which, like ovarian torsion or infection might lead to infertility) to be .7%, while another found 9.6% of egg donors self-reporting diminished fertility post-procedure. (15, 23) Neither finding provides definitive knowledge on the risk to future fertility, yet it may be argued that responsible risk disclosure would include identifying this lack of clarity to potential donors.
The large proportion of websites (41%) not following ASRM's suggested age minimum of 21 to donate may also suggest exploitation. Presumably, this guideline seeks to ensure that donors are emotionally mature enough to make a decision that may impact their physical and psychological well being.
Affiliation with ASRM or SART is associated with higher adherence to the guidelines, but not completely so. For instance, of ASRM-member clinic websites and websites of agencies that have signed the SART agreement to abide by ASRM guidelines, 25.6% paid premiums for traits, not complying with guidelines. Websites that pay more for traits were more likely to refer to or quote ASRM's guidelines on compensation, but often just mentioned the $5,000 to $10,000 compensation range that ASRM deems acceptable given justification—not the stipulations discouraging trait-based payment variation. In this way, websites not following this aspect of the guidelines may gain credibility to website users simply by quoting the section of the guidelines that they do follow.
These data have several implications for future policy. Our findings demonstrate that ASRM and SART do exert a measure of influence over its members by issuing guidelines and suggestions. Yet questions arise as to how effective exactly such guidelines are at regulating behavior and whether, in certain instances, there may be a need for stronger regulatory mechanisms. Nonetheless, professional membership is voluntary and is not an option for agencies since they are not medical service providers or facilities. Our data found that agencies are less compliant, indicating a need for regulation of some kind, yet questions then arise of who should do the regulating and how and to what degree.
These data also have several implications for future research. Future studies could examine what factors predict the suggested age minimum requirements and disclosure of risks. The data also suggest the need to examine women who donated under vs. over the age of 21, and to study differences in their concerns and perceptions about the donation process. Research could also probe public attitudes and perceptions concerning trait-based payment premiums and understandings of genetically inheritable traits.
This study design has several limitations. Although we evaluated the compensation offered and presentation of risks online; practices may differ on-site. We reported on sites that recruited online and displayed compensation, but not on sites that recruited online without displaying compensation. Further, we attempted to simulate the path a potential donor might take online, yet she might instead search using other key words and phrases (e.g., “egg donor” or “selling eggs”), or may be recruited through other online channels such as digital banner ads (e.g., on Facebook) or classified ads (e.g., on Craigslist).
Nonetheless, our study provides data on websites that has not been explored heretofore, and suggests that egg donation agencies and clinics do not fully comply with professional guidelines on financial compensation of oocyte donors. This lack of compliance with ethical guidelines raises concerns as it suggests possible exploitation of donors (i.e., not disclosing risks alongside compensation and recruiting below age 21), and selective valuation of human traits (i.e purchasing eggs themselves rather than compensating for the donor's time, inconvenience and discomfort). Indeed a substantial portion of recruiting entities do not appear to follow ASRM's guidelines on compensation, though SART and ASRM endorsement appear to provide some beneficial effect, albeit incomplete. In sum, this research is the first to systematically explore ethical compensation guidelines in online egg donor recruitment and has critical implications for policy, practice and research, suggesting needs for consideration of possible changes in guidelines and/or improvements in compliance, and monitoring by ASRM or others.
CAPSULE.
Systematic analysis of 102 websites of IVF clinic and egg donor agency websites demonstrate considerable lack of compliance with ASRM's ethical guidelines regarding trait-based compensation, presentation of risks, and recruitment age minimums.
Acknowledgments
Sources of Financial Support: none
Footnotes
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Disclaimers: The opinions expressed here are the authors’ and do not reflect the policies and positions of the National Institutes of Health, the U.S. Public Health Service, or the U.S. Department of Health, or the Ethics Committee of the American Society for Reproductive Medicine.
COI statement: We have no conflict of interests.
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