"I want us to be a normal family": Toward an understanding of the functions of anonymity among U.S. oocyte donors and recipients.

BACKGROUND: Anonymity remains the more common practice in gamete donations, but legislation prohibiting anonymity with a goal of protecting donor-conceived children's right to know their genetic origins is becoming more common. However, given the dearth of research investigating the function of anonymity for donors and recipients, it is unclear whether these policies will accomplish their goals. The aim of this study was to explore experiences with anonymity among oocyte donors and recipients who participated in an anonymous donor oocyte program and to understand the ways in which anonymity functions for them. METHODS: Semistructured interviews were conducted with 50 women: 28 oocyte donors and 22 recipients who were recruited from an academic center for reproductive medicine in the United States. RESULTS: Donors and recipients view anonymity both as a mechanism to protect the interests of all parties (recipients, donors, and donor-conceived children) and as a point of conflict. Specifically, three key areas were identified where both donors and recipients saw anonymity as having an important role: relieving anxieties about family structures and obligations; protecting their interests and those of donor-conceived children (while acknowledging where interests conflict); and managing the future. CONCLUSION: As gamete donation increasingly moves away from the practice of anonymity, examining why anonymity matters to stakeholders will be helpful in devising strategies to successfully implement identity-release options.

Risk factors for a suboptimal response to gonadotropin-releasing hormone agonist trigger during in vitro fertilization cycles.

OBJECTIVE: To identify risk factors for a suboptimal response to gonadotropin-releasing hormone (GnRH) agonist trigger in in vitro fertilization (IVF) cycles. DESIGN: Retrospective cohort study. SETTING: Academic medical center. PATIENT(S): All 424 patients undergoing fresh IVF cycles (n = 500) between August 2007 and June 2013 in whom a GnRH agonist was used as all or part of the ovulation trigger. INTERVENTION(S): GnRH-antagonist-based IVF cycles triggered with leuprolide acetate alone or in combination with low-dose human chorionic gonadotropin. MAIN OUTCOME MEASURE(S): Suboptimal response to GnRH-agonist trigger, as defined by a serum luteinizing hormone (LH) level <15 mIU/mL on the morning after trigger. RESULT(S): The rate of suboptimal response to the GnRH-agonist trigger was 5.2%. Patients with a suboptimal hormone response had lower follicle-stimulating hormone (<0.1 vs. 3.48) and LH (<0.1 vs. 2.51) levels on day 2 of the cycle start, lower LH (0.109 vs. 0.596) on the day of trigger, and required longer stimulation and more gonadotropins than those with an adequate response. Suboptimal responders were also more likely to have irregular menses and be on long-term oral contraception. Patients with an undetectable LH on the day of trigger had a 25% chance of a suboptimal LH surge. In our study cohort, limiting the use of the GnRH-agonist trigger alone to patients with a trigger day LH ≥0.5 would have reduced the rate of suboptimal response from 5.2% to 0.2%. CONCLUSION(S): Long-term hormonal contraception use is an independent risk factor for suboptimal response to GnRH-agonist trigger. Patients with very low endogenous serum LH levels on the day of LH trigger are at increased risk for a suboptimal GnRH-agonist trigger response. Understanding the at-risk phenotype and using trigger day LH as a marker for increased risk of suboptimal GnRH-agonist trigger response can be helpful for individualizing treatment and selecting a safe and efficacious trigger medication for patients undergoing IVF.

Once you're choosing, nobody's perfect: is more information necessarily better in oocyte donor selection?

Despite a growing body of research examining the psychosocial issues involved in oocyte donation, few studies have examined the role of information in the process of donor selection. The aim of this interview-based qualitative study was to understand how donor oocyte recipients relate to information provided about potential oocyte donors, how they use this information to select donors and their preferences for, and reactions to, various types of information provided to them. Donor oocyte recipients who underwent treatment between 1995 and 2011 were recruited for participation from an academic centre for reproductive medicine. Twenty-two oocyte donor recipients participated. Findings indicate that recipients use information to select donors who they believe would enable them to fulfill their priorities: having a healthy child and 'passing' as genetically related. Obtaining more specific information prompted a focus on donor imperfections and presented a burden of choosing. Moreover, for participants preferring distance, having more information created dilemmas by making the donors less abstract. Although more information and options are often desired by oocyte donor recipients, increased choice can also present psychological dilemmas and emotional costs. Further research is needed to investigate the influence of information-related conflicts on patient decision-making, post-treatment emotional adjustment and disclosure decisions.

'The BRCA clock is ticking!': negotiating medical concerns and reproductive goals in preimplantation genetic diagnosis.

Despite research on BRCA1/2 mutation carriers attitudes towards preimplantation genetic diagnosis (PGD), considerably less is known about individuals' experience with its use. Through case reports of BRCA1/2 mutation carriers' thoughts on, and use of, PGD, this paper highlights how the option of PGD is experienced and negotiated in the context of reproductive and life-course goals. Drawing on qualitative interviews with 38 BRCA1/2 mutation carriers, this article focuses on a subsample of 10 interviewees who sought consultation for, and/or attempted, PGD, with in-depth reports of 3 cases and summary decisions of the remaining 7. Three couples decided against PGD, and one was deciding at the time of the interview. Interviewees discuss key aspects of their experience prior to, and going through, PGD for BRCA1/2, including potential challenges of becoming pregnant through PGD and of heightened pressure to achieve their reproductive goals more quickly. Despite considerable focus on ethical issues in screening embryos for mutations associated with adult-onset cancer risk, less attention has been paid to the technical, logistical, and related psychosocial issues. Narrative case reports may help individuals develop appropriate expectations of PGD for BRCA prepare for possibly challenging decisions and outcomes, and ultimately determine whether it is compatible with their reproductive goals.

WITHDRAWN: Initiation of the Society for Assisted Reproductive Technology Donor Egg Registry: a report from the Donor Egg Registry Task Force.

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Incorporating information regarding preimplantation genetic diagnosis into discussions concerning testing and risk management for BRCA1/2 mutations: a qualitative study of patient preferences.

BACKGROUND: Studies have shown that BRCA1/2 mutation carriers are interested in learning about reproductive options such as preimplantation genetic diagnosis (PGD) to prevent passing their risk onto their children. However, attitudes vary widely, and the procedure raises complex ethical and psychosocial issues. This complexity, plus the highly technical nature of PGD, makes it difficult to integrate PGD information into genetic counseling sessions that already cover probabilistic, emotionally charged risk information. METHODS: A total of 33 carriers of the BRCA1/2 mutation who were of reproductive age and had previously undergone genetic counseling viewed a tutorial regarding PGD and were interviewed concerning their attitudes toward PGD and preferences about how to include PGD information in genetic counseling. RESULTS: The majority of participants preferred to be briefly informed of the availability of PGD information, and to receive written materials regarding PGD, but with the option of deferring detailed discussion if they already believed themselves to be overloaded or perceived that PGD was not immediately relevant to their risk management and/or childbearing plans. For some individuals, the stress of testing temporarily interfered with information processing, producing states of cognitive avoidance ("in a fog," or "tuning out"). Some preferred to discuss PGD with a physician with whom they had an ongoing relationship (eg, obstetrician/gynecologist, primary care provider, or oncologist). CONCLUSIONS: Providers offering cancer genetic testing may consider indicating the availability of PGD information to their patients, while attending to the patients' level of interest and ability to absorb information. Research is needed to link patient responses to information overload with psychosocial outcomes (eg, distress, and quality of decision-making). Continuing medical education is needed to support providers in facilitating informed decisions regarding PGD.

Should all oocyte donors receive prophylactic antibiotics for retrieval?

In a retrospective study comparing 526 oocyte donors who received prophylactic antibiotics for oocyte retrieval with a comparable group of 625 who did not, the incidence of infection after retrieval was reduced from 0.4% to 0 in the group receiving antibiotics. Donors take risks but have no medical indication for the procedures that they undergo; our data suggest that prophylactic antibiotics at retrieval should be considered to minimize the risk of infection.

The incidence of both serious and minor complications in young women undergoing oocyte donation.

OBJECTIVE: To investigate the incidence of serious and minor complications experienced by women undergoing controlled ovarian hyperstimulation and oocyte retrieval for oocyte donation. DESIGN: Retrospective study. SETTING: University-based IVF center. PATIENT(S): Five hundred eighty-seven donors underwent 973 cycles of controlled ovarian hyperstimulation and 886 oocyte retrievals for anonymous or directed oocyte donation. INTERVENTION(S): Controlled ovarian hyperstimulation; oocyte retrieval. MAIN OUTCOME MEASURE(S): Complications of the procedure. RESULT(S): The rate of serious complications, which included ovarian hyperstimulation syndrome, ovarian torsion, infection, and ruptured ovarian cyst, was 6 in 886 (0.7%) retrieval cycles. The rate of minor complications severe enough to prompt the donor to seek medical attention after retrieval was 8.5%. The cancellation rate after stimulation cycle initiation was approximately 9%, regardless of whether the donation was anonymous or directed. CONCLUSION(S): This study provides information on the incidence of serious complications experienced by oocyte donors after controlled ovarian hyperstimulation and oocyte retrieval. It provides evidence that with careful monitoring, and when a liberal cancellation policy is followed, oocyte donors experience lower rates of ovarian hyperstimulation syndrome, compared with infertile women undergoing IVF. Furthermore, the study provides the first set of data on the rate of symptomatic minor complications experienced by oocyte donors. This information will help clinicians administer appropriate informed consent to the young women who present themselves as potential oocyte donors.

Researching human oocyte cryopreservation: ethical issues.

OBJECTIVE: To evaluate some ethical concerns related to the selection of participants for oocyte cryopreservation research. DESIGN: Review of ethical issues related to human oocyte cryopreservation research. SETTING: Academic medical center. PATIENT(S): None. INTERVENTION(S): None. MAIN OUTCOME MEASURE(S): A discussion of some ethical concerns surrounding selection of participants for oocyte cryopreservation research. RESULT(S): Human oocyte cryopreservation has the potential to expand reproductive options for infertile couples. Care needs to be taken, however, to carefully select participants in ways that maximizes benefits to them and to society and minimizes risks. Infertility programs can do so by trying to recruit women who stand to benefit the most from participating in oocyte cryopreservation protocols. CONCLUSION(S): Biomedical research is necessary to improve current medical therapies. Oocyte cryopreservation can increase the flexibility of assisted reproductive programs and offer hope to a significant number of infertile couples. Nonetheless, scientific research cannot be attentive only to the creation of new knowledge and new technologies; it also is inextricably tied to ethical considerations about the well-being of participants.

Preimplantation genetic diagnosis for retinoblastoma: the first reported liveborn.

PURPOSE: To develop an accurate mutation analysis procedure for retinoblastoma gene (RB1) mutation, which is sensitive at the single-cell level, and to use in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) to achieve pregnancies without retinoblastoma. DESIGN: Case report. METHODS: Twelve day 3 embryos, obtained by IVF with intracytoplasmic sperm injection, underwent single-cell DNA testing via polymerase chain reaction and restriction enzyme analysis to detect the presence of a paternal RB1 mutation. Embryos were diagnosed as being unaffected and were transferred to the uterus on day 5. MAIN OUTCOME MEASURES: Achieving a healthy pregnancy and delivery, assessed by clinical presentation, fundus photography, and RB1 molecular analysis. RESULTS: A singleton pregnancy was achieved, and a child without retinoblastoma was born. The absence of the paternal RB1 mutation was confirmed on a sample of peripheral blood from the newborn. CONCLUSIONS: We are first to report a successful human liveborn, delivered after IVF with preimplantation genetic diagnosis for retinoblastoma. The successful result indicates that preimplantation genetic diagnosis exists for this genetic disease and may represent a viable alternative to prenatal diagnosis with the subsequent option of terminating an affected pregnancy.