Psychosocial outcomes of children born via embryo donation.

STUDY QUESTION: What are parents' perceptions of their relationships with and the psychosocial adjustments of their children who are born via embryo donation? SUMMARY ANSWER: Families created through embryo donation have well-adjusted parent-child relationships and reassuring child psychosocial outcomes. WHAT IS KNOWN ALREADY: Embryo donation is an effective and growing form of third-party reproduction, but there is limited research in this field. Prior studies suggest that families created through gamete donation function well regarding parent-child relationship quality and child behavioral and socioemotional adjustment. STUDY DESIGN, SIZE, DURATION: This is a cross-sectional survey study with 187 total participants. PARTICIPANTS/MATERIALS, SETTING, METHODS: Parents of children born via embryo donation were recruited nationally by contacting all embryo donation programs registered with the Society for Assisted Reproductive Technology Clinic Outcome Reporting System (SART CORS) as well as medically directed embryo donation or 'embryo adoption' centers. Participants completed three online Qualtrics questionnaires. The first was a survey including 33 questions on demographics, the procurement process, and self-reported obstetric outcomes. Participants also completed two standardized measures assessing children's behavior and parents' adjustment to parenthood: the Strengths and Difficulties Questionnaire (SDQ) and the Parental Acceptance-Rejection Questionnaire (PARQ). Scoring of the SDQ and PARQ was totaled and compared to standardized values (SDQ) or previously published results on other forms of gamete donation (PARQ), such as oocyte donation and sperm donation. MAIN RESULTS AND THE ROLE OF CHANCE: On the SDQ (n = 46), the average total difficulties scores by age were: 8.2 ± 0.98 for ages 2-4, 7.6 ± 0.93 for ages 5-10, and 3.5 ± 0.77 for ages 11-17; this is compared to the normal reported range of 0-13, which indicates that clinically significant psychosocial problems are unlikely. Across all ages and individual categories (emotional symptoms, conduct problem, hyperactivity, peer problem, prosocial), scores on the SDQ were within the normal ranges. The average PARQ score (n = 70) for all respondents was 27.5 ± 1.18 (range: 24-96), suggesting perceived parental acceptance. LIMITATIONS, REASONS FOR CAUTION: Because this study was cross-sectional, it could not capture familial relationships over time. This survey-based study design allows for potential selection bias (parents of well-adjusted children may be more likely to participate). Additionally, the overall sample size is relatively small; however, it remains one of the largest published to date. Another significant limitation to this study is the lack of generalizability: most participants were recruited from private, faith-based, embryo donation programs who are demographically similar. WIDER IMPLICATIONS OF THE FINDINGS: Though embryo donation is an established form of third-party reproduction, it is significantly less robustly studied compared to other forms of gamete donation (oocyte or sperm donation). This study provides a larger data set with a more expanded age range of children compared to the limited number of previously published studies. Furthermore, these findings indicate a high parental disclosure rate with respect to the use of embryo donation which contrasts previous findings. STUDY FUNDING/COMPETING INTEREST(S): No external funding source was utilized for the completion of this study. No conflicts are disclosed. TRIAL REGISTRATION NUMBER: N/A.

Disposition preferences in oocyte preservation patients.

PURPOSE: To characterize the frozen oocyte disposition preferences of patients undergoing medical and planned fertility preservation. METHODS: All oocyte cryopreservation (OC) patients were identified between 2015 and 2018. Demographic information and fertility preservation (FP) indication (medical or planned) were identified for each patient. Oocyte disposition options included disposal, donation to research, or donation to a specified third party, which was decided at the time of initial consent and made available in the electronic medical record. The primary outcome was the disposition selection. Secondary outcomes included differences in demographic variables and disposition selections between medical and planned FP patients using chi-squared analysis. RESULTS: A total of 336 OC patients with a documented oocyte disposition preference were identified in the study timeframe. Patients were on average 34.5 years old (SD = 5.1) and were predominantly White (70.2%), nulliparous (83.0%), with a BMI of 24.7 (SD = 5.4). A total of 101 patients underwent OC for medical FP and 235 for planned FP. In both groups, the most commonly selected disposition option was donation to research (50% planned, 52% medical), followed by donation to a specified third party (30% planned, 30% medical), and finally disposal of oocytes (20% planned, 18% medical). There were no significant differences in disposition selection between each group. When comparing patient variables between groups, medical FP patients were more likely to be under the age of 35 and were less likely to be nulliparous (p < .001). CONCLUSION: This study shows that oocyte disposition choices are similar in patients undergoing OC for medical and planned indications. As donation to research was the most commonly selected option in both groups, it is time to start thinking of streamlining ways to utilize this potential research material in the future.

Predictors and outcomes in breast cancer patients who did or did not pursue fertility preservation.

PURPOSE: Breast cancer is the most common cancer in reproductive age women, and treatment can affect fertility; however, there is often concern regarding the safety of increased estradiol (E2) levels and potential delays in treatment with ovarian stimulation for fertility preservation (FP). The aim of this study was to compare recurrence and survival in breast cancer patients who pursued FP without concurrent letrozole to those who did not (non-FP). METHODS: We reviewed charts of women with breast cancer who contacted the FP patient navigator (PN) at Northwestern University from 01/2005-01/2018. Oncology and fertility outcome data were collected. Data were analyzed by Chi-square test or regression, as appropriate. Kaplan-Meier curves were used to examine breast cancer recurrence and survival. Statistical analyses were performed with SPSS IBM Statistics 26.0 for Windows. RESULTS: 332 patients were included, of which 157 (47.3%) underwent FP. Median days to treatment after consulting the PN was 35 in the FP group and 21 in non-FP (p < 0.05). Cancer recurrence was noted in 7 (4.7%) FP patients and 13 (7.9%) non-FP patients (NS), and mortality in 5 (3.2%) FP patients and 7 (4.2%) non-FP patients (NS). Within the FP group, no significant differences were found in recurrence or mortality based on ER status, age, BMI, peak E2 level or total gonadotropin dose. Likelihood of pursuing FP was primarily a function of age and parity, and was not affected by breast cancer stage. To date, 21 have used cryopreserved specimens, and 13 (62%) had a live birth. CONCLUSIONS: FP is safe and effective in breast cancer patients, regardless of receptor status; E2 elevations and the 2-week delay in treatment start are unlikely to be clinically significant. These findings are unique in that our institution does not use concomitant letrozole during stimulation to minimize E2 elevations in breast cancer patients.

Ovarian stimulation is a safe and effective fertility preservation option in the adolescent and young adult population.

PURPOSE: The aim of this study is to describe the multidisciplinary approach and controlled ovarian hyperstimulation (COH) outcomes in adolescent and young adult (AYA) patients (ages 13-21) who underwent oocyte cryopreservation for fertility preservation (FP). METHODS: Multi-site retrospective cohort was performed from 2007 to 2018 at Northwestern University and Michigan University. Data were analyzed by chi-square test, t-test, and logistic regression. RESULTS: Forty-one patients began COH of which 38 patients successfully underwent oocyte retrieval, with mature oocytes obtained and cryopreserved without any adverse outcomes. To treat this group of patients, we use a multidisciplinary approach with a patient navigator. When dividing patients by ages 13-17 vs. 18-21, the median doses of FSH used were 2325 and 2038 IU, the median number of mature oocytes retrieved were 10 and 10, and median number frozen oocytes were 11 and 13, respectively. Median days of stimulation were 10 for both groups. There was no statistical difference in BMI, AMH, peak E2, FSH dosage, days stimulated, total oocytes retrieved, mature oocytes retrieved, and oocytes frozen between the two groups. Three patients were canceled for poor response. CONCLUSION: COH with oocyte cryopreservation is a feasible FP option for AYAs who may not have other alternatives when appropriate precautions are taken, such as proper counseling and having a support team. These promising outcomes correspond to similar findings of recent small case series, providing hope for these patients to have genetically related offspring in the future.

Is employer coverage of elective egg freezing coercive?: a survey of medical students' knowledge, intentions, and attitudes towards elective egg freezing and employer coverage.

PURPOSE: The purpose of this study was to understand medical students' knowledge, intentions, and attitudes towards oocyte cryopreservation and employer coverage of such treatment. METHODS: This cross-sectional study was performed via an online cross-sectional survey distributed to 280 female medical students from March through August 2016. Demographics, attitudes towards employer coverage, and factors influencing decision-making were assessed via a self-reported multiple-choice questionnaire. The relationship between respondents' attitudes towards employer coverage and other parameters was analyzed. RESULTS: A total of 99 responses were obtained out of 280 female medical students. Most respondents (71%) would consider oocyte cryopreservation (potential freezers), although 8% would not consider the procedure and 21% were unsure. Seventy-six percent of respondents felt pressure to delay childbearing. Potential freezers were more likely to be single (p = 0.001), to report feeling pressure to delay childbearing (p = 0.016), and to consider egg freezing if offered by an employer (p < 0.001). Importantly, 71% percent did not view employer coverage as coercive and 77% of respondents would not delay childbearing due to employer coverage. Factors influencing decision-making in potential freezers were absence of a suitable partner (83%), likelihood of success (95%), and health of offspring (94%), among others. Knowledge about the low chance of pregnancy per oocyte (6-10%) would influence decision-making in 42% of potential freezers. CONCLUSION: Oocyte freezing is an acceptable strategy for the majority of young women surveyed. Pressure to delay childbearing was related to openness to freeze eggs. The majority of respondents did not find employer coverage for egg freezing coercive although further research is needed with larger, representative samples to ascertain the relationship between pressure to delay childbearing due to work demands and employer coverage for egg freezing.

Blurring the line between life and death: a review of the psychological and ethical concerns related to posthumous-assisted reproduction.

Posthumous-assisted reproduction (PAR), though viewed unfavourably by some, is desirable to many individuals whose partners die prior to the completion of family building. PAR is technically feasible for males and females both pre- and post-mortem and these procedures have previously been completed on numerous occasions. However, such treatment is associated with three primary ethical concerns: autonomy; beneficence; and justice for the living, the deceased, and the soon-to-be conceived. Further, there are many psychological risks of PAR which may affect all involved parties. As such, early psychological counselling of patients and surviving family members is warranted.

Psychological Counseling of Female Fertility Preservation Patients.

Young cancer patients are increasingly interested in preserving their fertility prior to undergoing gonadotoxic therapies. Although the medical safety and treatment protocols for fertility preservation have been well documented, limited research has addressed the emotional issues that arise in fertility preservation patients. We briefly review the literature on the psychosocial issues in adult female fertility preservation treatment and describe our experiences within this patient population. Our findings suggest that several important issues to be addressed during the psychological counseling of adult female fertility preservation patients include: (1) preexisting psychological distress in patients undergoing treatment, (2) choice of fertility preservation strategy in the face of an uncertain relationship future, (3) decision making regarding use of third-party reproduction (e.g., sperm/egg donation, gestational surrogacy), (4) treatment expectations regarding pregnancy and miscarriage, (5) ethical issues related to treatment including the creation, cryopreservation, and disposition of embryos/oocytes, and (6) decision regret from patients who declined fertility preservation.

A Randomized Pilot Trial of the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool) with Their Children About Their Genetic Origins.

INTRODUCTION: Parents who use donated gametes or embryos to form their families struggle with telling their children about their genetic origins. We developed the Tool to Empower Parental Telling and Talking (TELL Tool) to support parents in disclosure to their children and an eBook attention control. METHOD: A randomized parallel, two-group, attention-controlled clinical pilot trial was conducted online during COVID-19. Feasibility, acceptability, and preliminary effects among parents with children aged 1-16 years were examined. RESULTS: Over 10 months, our target of 75 parents were enrolled (85% of eligible [95% confidence interval (CI), 76% to 91%]), and 68% (95% CI: 57% to 78%) were retained at 12 weeks. At 4 and 12 weeks, positive trends were found for parental disclosure, telling confidence, and anxiety compared with attention controls. DISCUSSION: The study protocol is feasible, and the TELL Tool is acceptable to parents and demonstrates a positive effect on parents' ability to tell their children. The results support the implementation of a large efficacy trial.

Disposition of unused cryopreserved embryos: opportunities and liabilities.

Cryopreservation of embryos has become an essential aspect of assisted reproductive technology, allowing for greater clinical efficiency and increased safety. However, the increasing numbers of cryopreserved embryos in clinics worldwide pose challenges to all stakeholders with respect to the disposition and donation of one's embryos when the gamete providers have completed their family building. The following series of articles provides an update of outcomes, challenges, and controversies related to embryo disposition. The first article describes the current and future medical potential of donated embryos for human stem cell research and other applications. Second, the practice of embryo donation to other intended parent(s) is summarized, and a review of the literature on child outcomes is presented. Third, the logistics and programmatic steps in managing embryos designated for disposal are discussed, including the option for compassionate transfer. Fourth, legal experts summarize precedent setting cases in the United States and the current legal environment of unused embryo management in the setting of the recent Supreme Court decision in Dobbs v. Jackson Women's Health Organization.

Development of the Tool to Empower Parental Telling and Talking (TELL Tool): A digital decision aid intervention about children's origins from donated gametes or embryos.

Objective: This study aimed to create and develop a well-designed, theoretically driven, evidence-based, digital, decision Tool to Empower Parental Telling and Talking (TELL Tool) prototype. Methods: This developmental study used an inclusive, systematic, and iterative process to formulate a prototype TELL Tool: the first digital decision aid for parents who have children 1 to 16 years of age and used donated gametes or embryos to establish their families. Recommendations from the International Patient Decision Aids Standards Collaboration and from experts in decision aid development, digital health interventions, design thinking, and instructional design guided the process. Results: The extensive developmental process incorporated researchers, clinicians, parents, children, and other stakeholders, including donor-conceived adults. We determined the scope and target audience of the decision aid and formed a steering group. During design work, we used the decision-making process model as the guiding framework for selecting content. Parents' views and decisional needs were incorporated into the prototype through empirical research and review, appraisal, and synthesis of the literature. Clinicians' perspectives and insights were also incorporated. We used the experiential learning theory to guide the delivery of the content through a digital distribution plan. Following creation of initial content, including storyboards and scripts, an early prototype was redrafted and redesigned based on feedback from the steering group. A final TELL Tool prototype was then developed for alpha testing. Conclusions: Detailing our early developmental processes provides transparency that can benefit the donor-conceived community as well as clinicians and researchers, especially those designing digital decision aids. Future research to evaluate the efficacy of the TELL Tool is planned.

Alpha Test of the Donor Conception Tool to Empower Parental Telling and Talking.

OBJECTIVE: To conduct an alpha test of the prototype of a digital decision aid to help parents disclose donor conception to their children, the Donor Conception Tool to Empower Parental Telling and Talking (TELL Tool). DESIGN: Convergent mixed-methods design. SETTING: Virtual interviews in places convenient to the participants. PARTICIPANTS: A purposeful sample (N = 16) of nine gamete-donor and embryo-recipient parents and eight clinicians, as one parent was also a clinician. METHODS: We conducted cognitive interviews to explore participants' perceptions about the TELL Tool prototype and observe patterns of use. The International Patient Decision Aid Standards (i.e., usability, comprehensibility, and acceptability) guided the development of the qualitative interview guide and directed the qualitative analysis. We also collected data about participants' perceptions and ratings of the helpfulness of each of the prototype's webpages regarding parents' decision making about disclosure. Descriptive statistics were used to analyze the helpfulness ratings before we merged the two data sets to optimize understanding. RESULTS: Participants reported that the TELL Tool was a helpful digital decision aid to help parents tell their children how they were conceived. Most (93.7%) webpage rating scores indicated that the content was very helpful or helpful. The participants identified content and technical areas that needed refinement and provided specific recommendations such as adding concise instructions (usability), tailoring adolescent language (comprehensibility), and softening verbiage (acceptability). CONCLUSION: Alpha testing guided by the International Patient Decision Aid standards was an essential step in refining and improving the TELL Tool prototype before beta testing.

Development of an informational web site for recruiting research participants: process, implementation, and evaluation.

Internet-based research is increasing, yet there is little known about recruitment approaches that target the Internet. Investigators have been slow to discuss how to plan, develop, and enhance recruitment using the Internet when well-concealed or disparate populations, sensitive topics, or qualitative methods are interspersed into the aims of the study. The twofold purpose of this article was to (1) highlight the major steps and strategies undertaken to develop and implement an innovative Web site for recruiting high-genetic-risk couples who were considering preimplantation genetic diagnosis use, and (2) present the recruitment results and lessons learned based on enrollment, self-evaluation, and descriptive data. The Web site was developed using a five-step process designed by the investigators. A significant step in the process was determining the Web site objectives, which were enacted through contextual and design decisions, and also by incorporating a brief video and study logo into the Web site. The recruitment results indicate that, of the 22 participant couples, ∼82% were recruited via the Internet versus traditional recruitment approaches (ie, clinics, newsletters) and that the majority of couples viewed the Web site prior to enrolling in the study. In conclusion, developing a Web site using the five-step process can facilitate recruitment.

Oocyte donation disclosure decisions: a longitudinal follow-up at middle childhood.

Few studies have captured oocyte donation (OD) parents' decision processes about intended and actual disclosure over time. Likewise, OD children's perceptions about their family composition during middle childhood are underexplored. To address these gaps, a longitudinally followed cohort of OD recipient families was invited to participate in a qualitative, follow-up study. With an 86% response rate after 12 years, families were composed of oocyte recipient mothers (n = 6) and biological fathers (n = 6) representing 12 donor-oocyte conceived children (10.33 ± 1.23 years; mean ± SD). Of the 12 children, two that were aware and two that were unaware of their conceptual origins completed conversational interviews. Only one family in the initial cohort had disclosed OD to their children by the 12-year follow-up, despite 43% of parents intending to disclose and another 43% undecided about disclosure during pregnancy. Four parental disclosure patterns emerged at 12 years: (i) wanting to disclose; (ii) conflicted about disclosure; (iii) not planning to disclose; and (iv) having disclosed. Children that were unaware of their conceptual origins displayed no knowledge of their method of conception. There is a need for family-centric interventions to assist 'wanting to disclose' parents in their disclosure process and 'conflicted about disclosure' parents in their decision-making process post-OD treatment.

Parents' experiences telling children conceived by gamete and embryo donation about their genetic origins.

OBJECTIVE: To gain an in-depth understanding of parents' experiences telling children conceived by gamete and embryo donation about their genetic origins. DESIGN: Qualitative, descriptive. SETTING: Families' homes. PATIENTS: Gamete or embryo donation recipient parents living in the United States and who told their children, from birth to 16 years, about their genetic origins. INTERVENTIONS: Individual semistructured (n = 12) or dyadic (n = 2) parent interviews. MAIN OUTCOME MEASURES: Directed qualitative content analysis. RESULTS: Fourteen families that comprised 16 gamete or embryo donation recipient parents and represented 24 donor-conceived children between the ages of 4 months and 16 years participated in the study. Single parents (n = 3) and both parents in most two-parent families (n = 9) led the initial telling conversations. Parents recounted personal short stories using language that was both developmentally and medically appropriate. Multiple strategies, including children's books, were used by parents to aid them in their telling. The oldest donor-conceived children in each family were first informed of their genetic origins at birth (n = 10 families) or at 6 months (n = 1 family; "practice runs") or from 3.5 to 12 years (n = 3 families). The telling conversations took place during routine family activities that naturally brought parents and children in close proximity, usually in the home. CONCLUSIONS: Awareness of the nuances of parents' telling conversations with their children through the age of 16 years can help guide clinical counseling and the development of tools to aid parents in their telling conversations.

Gestational surrogacy: medical, psychosocial, and legal considerations.

Gestational surrogacy can provide an effective family-building method for women whose uterus is absent or dysfunctional and with contraindications to pregnancy, single men, and same-sex male couples. Over the past 30 years, gestational surrogacy cases have represented a growing percentage of third-party reproduction cases, both in the United States and internationally. The following series of articles provides a summary of current topics in optimizing GS arrangements. They focus on medical and psychological screening; psychosocial adjustment of carriers, children, and their families; legal considerations with precedent-setting cases that every clinician should know; and an international overview of cross-border surrogacy.

Emerging Views of Kinships Created Through Oocyte Donation.

BACKGROUND: The United States has the highest number of oocyte donation cycles, which account for an estimated one-quarter of all worldwide oocyte donation cycles. Although there has been a steady rise in oocyte donation treatment, understanding the kinship views of those intimately involved is lacking. These include women oocyte donors and parents who received donor oocytes to establish a pregnancy. PURPOSE: To explore the views and perspectives about genetic relationships and lineages among women who were oocyte donors and parents who received donated oocytes 10 to 12 years after donors and parents underwent oocyte donation procedures to establish a pregnancy. STUDY DESIGN AND METHODS: A longitudinal cohort of pregnant women who received donor oocytes participated in an expanded, follow-up study 12 years postpregnancy that included the women's heterosexual partners and biological fathers. Women who donated oocytes anonymously 10 to 12 years prior also participated. Qualitative content analysis was used to analyze participants' in-depth interviews. RESULTS: Six women who received donor oocytes and their heterosexual partners and biological fathers (n = 6), representing 12 children conceived by oocyte donation, and 3 women who donated oocytes anonymously representing 3 children participated. Themes that emerged from the women oocyte donors included a reexamination of anonymity and contact with recipient families, managing disclosure to their own children about possible half-siblings, and potential for consanguinity. For recipient parents, there was an overwhelming sense of gratitude to the women oocyte donors, concerns about navigating genetic information gaps, and contemplating future contact with the donors and/or half-siblings. CLINICAL IMPLICATIONS: Nurses can play a vital role in supporting and educating women oocyte donors and recipient parents about navigating complex relationship issues in donor kinships.

Ovarian Stimulation Is Safe and Effective for Patients with Gynecologic Cancer.

Purpose: To compare long-term outcomes of gynecologic cancer patients who pursued controlled ovarian hyperstimulation (COH) for fertility preservation (FP) with those who did not. Methods: Retrospective cohort, COH, and health outcomes in gynecologic cancer patients; data were analyzed by chi-square test, t-tests, and logistic regression. Results: Ninety patients with a gynecologic malignancy contacted the FP patient navigator: 45.6% (n = 41) had ovarian cancer, 25.6% (n = 23) endometrial cancer, 18.9% (n = 17) cervical cancer, 5.6% (n = 5) uterine cancer, and 4.4% (n = 4) multiple gynecologic cancers. From this cohort, 32 underwent COH, 43 did not, and 18 pursued ovarian tissue cryopreservation (OTC; 3 patients had both COH and OTC). Median age and type of cancer were not significantly different between the groups. COH patients had a range of 1-35 oocytes retrieved. Days to next cancer treatment in the COH group was 36 days; for those who declined COH, it was 22 days (not significant [NS], p > 0.05). There were two recurrences reported in the stimulation group and four in the no stimulation group (NS). Five deaths were reported, two in the stimulation group, none in the no stimulation group, and three in the OTC group (NS); 34% (n = 11) COH patients returned to use cryopreserved specimens, of which 45% (n = 5) had a live birth. Conclusion: Although time to next treatment was longer in the group of patients who underwent COH, this did not reach statistical significance. It appears that in selected patients with GYN malignancies, COH for oocyte or embryo cryopreservation is safe, with reasonable stimulation outcomes and no difference in long-term outcomes.

Mater semper certa est: motherhood is always certain.

The development of oocyte donation has led to a reexamination of the facets of motherhood: the genetic, gestational, and psychosocial contributions. In addition, the practice of oocyte donation has prompted a consideration of the unique psychosocial and legal aspects of this form of family building. In this section of Views and Reviews a summary and discussion of the long-term psychosocial adjustment of oocyte donor-conceived children and their parents is presented. Next, the current permeability around donor anonymity is investigated and questions regarding whether donor anonymity can still exist is discussed. Third, the evolution of oocyte cryopreservation and banking is reviewed and the future of oocyte banking is explored. Finally, as oocyte donation continues to grow and evolve, so too does the legal landscape in which it is practiced. Seminal legal cases are presented to describe the legal landscape that has shaped the practice of oocyte donation.