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A Retrospective Study of Oocyte Donors in the United States
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by
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Wendy Kramer and Jennifer Schneider M.D.
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Wendy Kramer
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Donor Sibling Registry
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P. O. Box 1571
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Nederland, CO 80466 U.S.A.
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www.donorsiblingregistry.com
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Jennifer Schneider, M.D., Ph.D.
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Arizona Community Physicians
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1500 North Wilmot, Suite B-250
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Tucson, AZ 85712 U.S.A.
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OPENING SLIDE
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Increasingly, more women are delaying having children until their 40’s,
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thereby decreasing their chances of becoming pregnant. With the upsurge in
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the number of women seeking to have children through in vitro fertilization
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(IVF), now supplemented by a growing interest in oocytes for stem-cell
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research, the demand for human eggs threatens to exceed supply. Young
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women are being recruited to become egg donors with the offer of large
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sums of money, typically $8-25,000 per egg retrieval cycle, but at times up
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to $100,000 in the US. In addition, clinics are now reporting a surge in egg
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donors as a way to deal with the recent economic downturn. Many of the
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couples seeking egg donors are from Europe, where paying for such services
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is illegal and waits can stretch for many years. (Wall Street Journal 12/9/08)
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INTRODUCTION
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Some 100,000 young women have sold or donated their eggs to
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approximately 470 IVF clinics in the US (Schneider, 2008). After egg
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retrieval, they are discharged from the IVF clinic but are rarely contacted
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afterwards. Consequently, there has been a dearth of studies of both short
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and long-term adverse consequences of ovarian stimulation and egg
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donation. In addition, only a few published studies have considered the
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emotional and psychological effects of egg donation on donors, their
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interest in learning about the outcomes of the pregnancies, or their
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willingness to be contacted by recipient families. To help remedy this lack
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of information, we undertook a retrospective study of 155 egg donors, many
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of them many years after egg retrieval.
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Methods
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To learn more about women’s experiences, medical outcomes, and attitudes
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regarding their egg donations, we constructed 25 questions and placed
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them on the website of Donor Sibling Registry (DSR), a US based worldwide
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registry, that helps donor-conceived individuals search for and contact their
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donor and/or their half siblings, as well as supplies support, news, and
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education for parents and former donors.
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RESULTS
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Of the 287 egg donors registered on the DSR with valid email addresses, the
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155 respondents reflected a response rate of 49.1%. The respondent’s mean
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age at the time of the first donation was 26.4 years old. The mean number
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of egg cycles per respondent was 2.9. Before egg donation, 43.2% had had
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at least one child, and after donation, 36.1% of the 155 women had had at
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least one (or one more) child. In addition, eight respondents were pregnant
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at the time they completed the survey. Thus, we have a large group of
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former egg donors who provided relatively long-term follow-up.
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MEDICAL ISSUES
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Our table summarizes the reported complications following egg donation
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both immediately and later. We can see that forty-one reported infertility
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and/or menstrual cycle changes. Of the 17 women reporting some type of
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new infertility problem (inability to conceive, delay in conceiving, or one or
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more miscarriages), 12 had had no children before egg donation; only 1 of
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these was pregnant (after IVF with her own eggs) while no others had
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children after the egg cycle(s), despite trying to conceive. One of these was
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told at age 27 she was “transitioning into menopause.” Others developed
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endometriosis or ovarian cysts and could not get pregnant. Since the
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majority had not tried for pregnancy before the egg donation, one cannot
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say how many of them may have had prior unrecognized infertility problems.
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Another unknown is whether one or multiple miscarriages had any relation
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to the ovarian stimulation. All 5 of the women who reported new infertility
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problems and who had given birth before ovarian stimulation eventually had
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a child after, although some needed up to 6 months of fertility treatments.
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Several respondents reported that when they developed medical problems shortly after
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egg retrieval, the fertility clinic was less than helpful. Reports included: difficulty in
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getting in touch with the clinic after hours; overt resentment by a particular physician
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who had had to come in over the weekend, inadequate information about OHSS such that
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the patient didn’t recognize the symptoms until she was very ill and went to see her
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physician; and a patient who had complications resulting from OHSS-related
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paracentesis, required hospitalization and surgery by her gynaecologist, and was never
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contacted by the IVF clinic.
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MEDICAL FOLLOW-UP
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In regards to follow-up by IVF clinics about late-developing medical problems
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in egg donors:
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Only four respondents (2.6%) reported that their clinic had initiated contact
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with them to in order to update their medical information.
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When asked about whether there were medical changes that the egg
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recipient should be informed of if possible, 34.2% (53/155) of respondents
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answered “yes” with these problems listed.
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EDUCATION
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Education about potential medical complications
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The survey asked former egg donors, “Is there anything you wish you had
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been informed of prior to your donations to better prepare you in making
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your decisions?” 38.8% wished they had received additional information. 14%
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citing medical concerns. These included: the side-effects of ovarian
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stimulation; the risks of OHSS; and the potential long-term side effects of the
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drugs they had taken, in particular infertility and cancer.
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CONTACT WITH FERTILITY CLINIC
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Contacts with the fertility clinic about medical issues
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IVF clinics need carefully to educate donors about the importance of
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contacting them to give medical and genetic updates
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In this study, a significant minority of donors had not, and were not planning
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to contact the IVF clinic if they had relevant medical information, because
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they didn’t recognize the value of this step.
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Of the 53 respondents who had reported new medical conditions that they
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thought might be of interest to the recipients, 58.5% attempted to contact
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their fertility center to update them. Several reported a negative outcomes
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such as a missing or destroyed chart; a clinic that had gone out of business
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or had relocated and couldn’t be found; and a clinic that declined to notify
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the recipients on the basis of anonymity.
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Another question asked whether the recipient would contact the IVF clinic in
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the future to convey “any medical or genetic problems that the recipient
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families should know of.” 66.4% simply said yes. 8.4% said they hadn’t ever
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thought about it until now; 4 wrote they didn’t realize they were supposed
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to or were permitted to contact the clinic with information; 7 said the clinic
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was closed or they couldn’t contact it; 2 wrote that they were told their
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donations were anonymous or that any contact would not be welcome.
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Seven answered “maybe” – if they thought their medical problem was
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genetic or severe. The remaining responses included, “Why worry the
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parents?” “I doubt they’d tell the families anyway.” And, “I had a full genetic
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screening at the time of donation, so there’s no need.”
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Learning of the presence of breast cancer or colon cancer in the family will
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lead to earlier screening of the children. Learning that the egg donor may be
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a carrier of a serious genetic disease such as cystic fibrosis will lead to the
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testing of the child, thus providing information that the child may later find
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important in his or her own decision-making about having children.
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INFO ABOUT PREGNANCIES
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Information about pregnancies and births
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As most oocyte donations in the United States are anonymous, most egg
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donors do not know who the recipients are and do not have contact with
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them. Many IVF clinics will not provide information to egg donors about
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whether a live birth resulted from the donor’s eggs, and some won’t even
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notify them whether a pregnancy has resulted.
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When asked, “Do you know whether any of your donations resulted in
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pregnancy, a birth, etc?” approximately half of the 155 donors responded
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affirmatively. To the question, “Have you asked your fertility center if there
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were successful births?” again, 49% replied “yes,” and only half of them were
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provided with the information they sought. The others were most often told
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that it was against the clinic’s policy to release any information.
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Among the 49.7% of respondents who did not attempt to contact the clinic
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to learn about births, the most common reason was that they had been told
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up-front that such information would not be available to them. “I was told
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that everything is kept confidential.” “It was strictly anonymous.” It is evident
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that many egg donors are curious about their genetic offspring. In answer to
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the question, “Is there anything you wish you had been informed of prior to
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your donations to better prepare you in making your decision?” 36.8% of the
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egg donors replied “yes” and most of these focused on their desire to learn
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about the children.
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Looking back to the time when they donated , 33.6% recall being properly
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educated and counseled on the possibility that their genetic offspring might
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be curious and wish to meet their donors. The remaining 66.4% of donors
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were not counseled on this issue, although many were told that there could
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not be any contact.
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Although none of the egg donors had been contacted, when asked, “Would
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you be open to contact if it was requested, 151/155 respondents (97.4%)
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wrote “yes,” with several answering “absolutely!” Four respondents were
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uncertain. No respondent would refuse contact with recipients if it was
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requested.
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EMOTIONAL IMPACT
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One area often omitted from counseling to donors is the emotional impact they may
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experience, which may change with time, and the emotional impact on the donors’ own
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children as well as the donor-conceived offspring. One respondent wrote that a photo of
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the baby, who resembled her, made her realize for the first time that “egg donation is
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not like donating blood and nothing more,” and that “an egg is not a mere cell.”
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Another, now pregnant with her first child, wonders what she will tell her child about the
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possible half-sibling, and when. Several women wrote of having many unanswered
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questions about their genetic children and of regret at being unable to get answers.
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Another wrote poignantly, “I wish I’d been told how much it hurts to know I can’t have a
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child of my own, but that due to IVF Egg Donor Share I may have a child out there. That
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if your IVF fails you may feel an empty feeling. One that after 10 years doesn’t go away.”
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FUTURE CONTACT
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In the future, egg donors who initially prize anonymity may want to have
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more information and contact with their biological children. Donors need to
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be offered adequate opportunities to think about the long-term impact that
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donating might have on them, their family, the family of the child being born
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and the child themselves. We found that the most common reason for
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wanting contact with resulting offspring was that knowing about a
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successful outcome would make them ‘feel good’. The next most common
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reason was to protect their children from having a sexual relationship with a
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half-sibling. Another reason was to be able to anticipate the possibility that
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in the future the child might attempt to contact them .
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REMAINING OOCYTES
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Egg donors often give up all rights to all of their eggs, which belong to
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the recipient couple. But in some cases they are not clearly told about
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the fate of surplus eggs, and here are two responses regarding this
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curiosity:
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ADVERSE EFFECTS
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This study supports previous reports of the prevalence of OHSS following
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ovarian stimulation, now recognized as a common adverse effect. Much less
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is known about long-term risks. The present study suggests a possible
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adverse effect of hormonal stimulation on menstrual cycle or fertility in
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some women. There is clearly a need for follow-up studies of fertility in egg
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donors after egg retrieval, along with records of a careful gynecologic
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history.
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In recruiting potential egg donors, IVF clinics in the US tend to understate
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the medical risks. Even when known risks are fully discussed, the
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prospective donor will be informed that long-term risks are unknown; young
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women may not clearly understand the difference between “there are no
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risks” and “there are no known risks”. The results of this survey make it clear
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that communication between egg donor and IVF clinic is often not
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encouraged.
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CONCLUSIONS AND RECOMENDATIONS
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We recommend that IVF clinics incorporate several procedures early on,
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around the time of egg retrieval:
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1. Clinics need to maintain donor records and to develop protocols to
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contact the donors regularly to update medical information of interest to
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recipients.
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2. The clinic needs to educate the egg donors about the importance of
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contacting the IVF clinic, even years later, to provide such information.
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Most people do not have sufficient knowledge of the contribution of genetics
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to various medical diagnoses to make this determination themselves.
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3. Clinics need to maintain medical records indefinitely. Donors need to be
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notified if any IVF-conceived children are born with genetic abnormalities or
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potentially inherited diseases as the woman may already have or someday
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want to have children of her own.
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4. Former egg donors should themselves be able to access critical
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information from the clinic, even years later. If an egg donor does contact
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the clinic with relevant information, the clinic needs to be able to contact the
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recipient family with the information.
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5. Egg donors as well as recipients, and eventually egg donor children
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should be made aware of the current on-line vehicle for updating and
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sharing medical information.
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6. The fertility clinic needs to consider the needs of IVF conceived children
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Reproductive specialists are highly focused on successful births.
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Paradoxically, it is evident from the results of this survey that fertility clinics
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pay little attention to the welfare of the children who result from successful
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ART. This is evident in several areas:
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The finding that 97% of respondents were never contacted by the
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fertility clinic for medical updates ignores the relevance of some
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medical problems in the biological parent to their children in terms of
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monitoring and follow-up.
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The reports by several egg donors of lost or destroyed records or
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fertility clinics closed or relocated so that the egg donors could not
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reach them to update information.
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Many donors were flatly told they would never be able to contact these
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children or even learn whether any were born. They were rarely
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informed about the possible curiosity of these children as they get
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older, nor their need to have access to the updated medical history of
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their biological mother.
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7. Need for disclosure about the potential uses of left-over oocytes
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Currently the primary focus of fertility clinics is to serve the needs of
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infertile women by maximizing the likelihood of a successful
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pregnancy. Egg donors and their IVF-conceived children have received
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scant attention from the clinic, and their needs and future health risks
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are rarely considered. The results of this study reinforce the need for a
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shift in values of IVF clinics, to where appropriate attention is given to
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the health and safety of the egg donors. It is high time that the ART
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field consider the long-term consequences for egg donors of donating
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their oocytes and to also recognize the needs of donor-conceived
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children.
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