Overall, as outlined in Fig. 1 and described more fully below, egg donor agencies appear to be increasing and changing; but clinicians vary in how they view, and whether and how often they use, these companies – from rarely to often. Agencies pose critical ethical concerns regarding informed consent, potential harms, justice (related to possible eugenics), and donors constituting a vulnerable group. Providers perceived variations in the quality of agencies. Medical and psychological screenings of donors can range, and be minimal or lacking. Agencies may not adequately track how many times a woman has previously donated, and/or may list a donor as available when she is not. Clinics may find that a donor has medical issues about which she was unaware, causing her stress. The dissemination of personal data about donors can pose potential confidentiality problems. Questions arise of whether increased monitoring or oversight of agencies may be beneficial.
Increasing use of agencies
As the demand for donor eggs has risen, agencies may be increasing, evolving, and affecting clinics’ practices. Due to agencies, patients often have more choices and information about donors than before. Providers have frequently altered their recruitment of donors and use of agencies and many clinics are increasingly working with these companies
Until recently, donors were anonymous. The clinics chose the donors. But market forces have changed things. The egg donor agencies are really taking over. [Other provider #5]
Clinical practice has changed, increasing the use of agencies, due not to altered regulations, but to market forces, particularly the growth of agencies, giving prospective parents more choices. Agencies have made more information about prospective donors available, potentially affecting clinics’ practices as well.
Clinics used to not show adult pictures of donors. But now, prospective parents can see photos, and a lot of patients want to. With these agencies, there are more patients than before. [Other provider #5]
Many clinics may thus use agencies in order to give patients more of a choice of potential donors – often through websites.
When patients wanted to do donor egg, some clinics would find the egg donor, and introduce that egg donor, on paper, to the patient, and the patient would have to either take her or leave her. A lot of people want more say about who their donor is. They may leave that clinic, and come to a program where they can go to a donor agency, look at tons of profiles, and pick someone who really seems right for them. [Other provider-patient #10]
Clinics vary in how much and in what ways they work with egg donor agencies. Many providers prefer to use only donors they know and have used before, rather than those from agencies. “Most reputable clinics choose their own donors.” [Other provider #5]
Nonetheless, partly because finding good egg donors can be hard, other clinics may both recruit donors on their own, and use those from agencies.
I’m a nurse and have run the donor egg program at my clinic for eight years. We recruit our own donors, and have agency donors, too. The most difficult issues are the recruitment of good donors, and the times when recipients don’t get pregnant. [Other provider #7]
The fact that agencies generally offer much more information about egg donors, often publicly online, can pose challenges though for oocyte recipients and the future children. Offspring created using purchased eggs might eventually want to find their biological mother using publicly available online data and information. More knowledge about donors can decrease anonymity, and create and shape expectations that children will receive these donors’ desired traits, raising expectations for the child.
Patients might come across the donor on the street. It’s complicated. And there’s a limit in choosing. If patients see the adult picture, it might distance them from the child as they see their child growing.” [Other provider #5]
Yet questions emerge of whether these choices, based on physical traits (e.g., height and blonde hair and blue eyes), and educational institutions (e.g., Ivy League) and attainment may at a certain point begin to raise concerns about possible eugenics.
The quality of agencies varies
Agencies also range widely in quality, and some may be better than others – in how well they evaluate, screen and prepare potential donors. In part, as a result, providers differ in their views of agencies.
A few providers had good experiences with agencies with which they have worked, establishing on-going relationships.
I haven’t worked with that many agencies. I’ve liked the ones I know, that the clinic uses. Recently, we used an agency and it turned out that the egg donor didn’t produce good eggs that could be fertilized. We would never have predicted it. The agency said it’s only happened to them once. [Other provider-patient #10]
Yet other providers have also experienced this problem of donors not ultimately producing sufficient usable eggs, despite the agency having suggested otherwise, suggesting that this problem may be more widespread than this interviewee suspects..
Many clinicians had more mixed or negative views and experiences concerning agencies. Agencies may, for instance, list as donors women who have characteristics that appeal to potential recipients, but turn out to be unavailable.
Providers also often felt that egg donor agencies did not always adequately screen donors. Clinicians thus frequently conducted their own assessments of all potential donors, including those from agencies.
Several clinics evaluate donors very carefully – much more so than do agencies. We have a strict program for our donors. We test donors a lot. One agency said I reject donors that have donated elsewhere. We send our donors’ profiles to a geneticist, and do extensive psychological testing. We regulate it ourselves. [Other provider #7]
Clinics may thus screen far more vigorously than do agencies.
Agencies may also not fully inform, educate and prepare prospective donors regarding the process, and the risks involved. Financial profit may motivate certain agencies, lowering their standards regarding which donors they accept, and how well they assess these women.
A lot of these egg donors are not being vetted properly. It’s big money. With the egg donor agencies, anybody can sign up on-line. There’s minimal screening. People can lie. Donors come in, and are surprised at the depth of my questions and the amount of detail. And I’m only asking them standard questions! They’ll say they did a psychological test on-line, which is really unethical, because a psychological test is supposed to be monitored. They’ll say, “Well, I met with somebody.” Or: “I’ve met with someone in the hallway for 10 minute,” or “The medical doctor met with me and said ‘everything’s going to be fine.’” But the doctor didn’t check whether the donor understood what she would be undergoing. Then they met with another psychologist or a social worker, and it was much briefer. Or there was nobody. Or they went to the clinic, and signed up. Who does quality control? With egg donor agencies, any female of the right age could sign up on-line. Basically if somebody applies, the agency will send a packet for them to fill out. They may send them to be evaluated by someone, have them do an abbreviated on-line psychological test. It’s not hard to be put “on the books” as a potential donor. They get often flown to a different clinic, and by then, potential parents are invested in them. [Other provider #5]
Problems surface because agencies do not fully or adequately probe potential donors’ personal or family medical histories. Clinicians then have questions that they come to probe further.
I see things on evaluations from the agencies that lead me to question donors more. On one egg donor evaluation, everything looked great. The father had been dead for a number of years. “What did he die of?” “He was murdered.” Given that information, I would want to get a good idea about what happened. [Other provider-patient #10]
Potential harms to donors
Practices of agencies could also potentially harm donors, who come either to learn about medical problems about which they were unaware, or they may face threats to confidentiality. Since agency screening may be minimal and/or superficial, some potential donors may suddenly learn for the first time, from a clinic, that they are in fact unsuitable, and/or have, or are at risk of, serious genetic problems. These potential donors then confront unexpected stress.
Most patients go by the donor’s looks or education – mostly looks – but I’ve turned down likeable, attractive donors, saying: “We’re here to rule out passing certain mutations to recipients. There are a number of reasons why I may not think it’s a good idea for you to proceed. This is not personal. It doesn’t mean I don’t like you, or that you’re not nice. But there are guidelines.” [Other provider #5]
Yet these donors had anticipated gaining financially, not learning about their own genetic risks or diseases. Agencies often do not inform donors about these potential pitfalls.
They get screened, and find out they have a genetic problem that’s going to affect their own future! And they’re not chosen as a donor, and don’t get paid! Nobody says, “Here, go to this nice mental health professional, and process how you just found out you’ve got this problem.” They should go talk to someone, but won’t. That’s a bum rap. Donors are looking for money, but can’t say that. They have to say they’re altruistic, or they won’t get chosen. But most are financially motivated. [Other provider #5]
Stigmatized, personal medical information about donors may also get spread, threatening their confidentiality.
We’ve seen confidentiality problems. By HIPAA [the Health Insurance Portability and Accountability Act], we can only give information we find about the donor to the donor, not the agency. But the agency then calls the donor, and asks her a lot of questions. She’s young and vulnerable and gives answers. The agency then gives out that medical information, which could be venereal disease testing, genetic testing, or drug testing, to the recipients. That is probably not illegal, because the agencies are not professionals – so they don’t have to behave according to professional guidelines or ethics. So they give information about one person to another. [Physician #14]
U.S. laws bar health care providers and institutions, but not egg donor agencies, from sharing personal information about potential donors with others – including clinicians, prospective parents and the public-at-large. Many agencies provide photos and extensive information about egg donors on websites, and/or send copies to prospective egg recipients and clinicians.
Policy implications: overseeing agencies?
Concerns arose that agencies do not always adhere to, or help promote, key parts of current guidelines – for instance, not monitoring the maximum number of times a woman can sell her eggs.
Guidelines aren’t necessarily being followed. The guidelines say egg donors are only supposed to donate six times, but a lot of agencies don’t respect that, despite what it can do to women’s bodies. I’ve read on the Internet and seen books by donors who say they don’t tell agencies what they’ve been through. Nor do the agencies necessarily ask. Major medical centers ask. For-profit agencies may not. [Other provider-patient #9]
Many – but not all – providers may then exercise heightened caution regarding potential donors’ numbers of prior donations, probing for this information very thoroughly. Yet other clinicians may simply accept the agency’s report of the potential donor’s past history regarding donations and other relevant behaviors.
It’s difficult to be 100 % sure that donors from agencies keep track of the number of cycles. One donor told me she’s never donated before. But she knew too much about egg donation. She seemed to think that the injections were gonna be a piece of cake. I said, “Something’s not adding up here. What’s going on?” She then told me she “had a cycle done elsewhere,” and “wasn’t happy” with the way they treated her. [Other provider #7]
Consequently, this provider now regularly checks records of women who have donated elsewhere. But agencies do not always agree to give this crucial information.
I check records every time I can get them – 60 % of the time – because we use a lot of agency donors. When an agency donor has done a previous cycle, I’ve gotten the records in every case – except when the program won’t release them to me. [Other provider #7]
At times, questions arise of whether egg donor agencies should be overseen in some way, though doing so presents challenges, obstacles and questions.
I would find some way to put the brokers and agencies out of business. But you’d have to figure out how to do that. I would put this aspect of medical care into the hands of medical professionals, and out of the hands of business people! [Physician #14]
The fact that egg agencies are involved with medical procedures, but are not operated by medical professionals can thus create problems.