Non-identified and directed embryo donation: a questionnaire study on donor and recipient perspectives.

With the growing challenge of abandoned surplus embryos in the ART arena, and the limited traction of embryo donation as a viable embryo disposition choice, it is important to better understand barriers to wider adoption of this opportunity. We aim to learn about perspectives and experience of participants in directed and non-identified embryo donation programmes. This was a longitudinal cohort survey study, of all participants in an embryo donation programme in a single university affiliated clinic between 2016 and 2020. Clinical data were extracted from counselling reports. Based on these data, non-identified online questionnaires were constructed and refined via Delphi procedure for face and content validity. Sixty-five online questionnaires were emailed between March-April 2021. Descriptive statistics, cross-tabulation, Fisher's exact test and t-test were used for analyses. Source of patient awareness, factors influencing the decision-making process, patient perspective and satisfaction were explored. The response rate was 67.2%. Most participants in the non-identified programme learned of it through their treating physicians, whereas most participants in the directed programme learned of it online. The main driver to donate across both cohorts was wanting to give others the opportunity to experience the joy of parenthood. Overall, 45% described moderate to marked difficulty in decision making related to donating their embryos, and this did not differ between cohorts. Non-identified donors reported feeling highly attached to the donated embryos more often than directed donors. Level of satisfaction was higher in the directed donation programme. Participants were more satisfied following directed than non-identified donation, and some even consider their counterparts as extended family. Our findings should be validated in various settings, and on larger samples.

Perspectiva legal del manejo de embriones supernumerarios en Italia. Soluciones prácticas de Derecho comparado / [Legal perspective of the management of supernumerary embryos in Italy. Practical Comparative Law Solutions]

Los avances en el ámbito de la medicina reproductiva han situado en un lugar destacado una nueva entidad: el embrión humano. La reconstrucción de su identidad jurídica reviste una importancia primordial en aras de encontrar soluciones a una de las cuestiones más sensibles que actualmente impulsan el debate en el contexto italiano, a saber, el destino de los embriones supernumerarios. La presente contribución realiza una sucinta revisión de las aportaciones efectuadas por la doctrina y la jurisprudencia tanto a nivel nacional como europeo en relación con este asunto, para posteriormente ahondar en algunas propuestas de carácter práctico, analizando sus potencialidades y aspectos críticos. (AU)

The advances in the field of reproductive medicine have placed a new entity at the forefront: the human embryo. The reconstruction of its legal identity assumes paramount importance in the pursuit of finding solutions to one of the most sensitive issues currently driving the debate in the Italian context, namely, the fate of supernumerary embryos. This contribution provides a concise review of the contributions made by doctrine and jurisprudence, both at the national and European levels, concerning this matter. Subsequently, it delves into some practical proposals, analyzing their potentialities and critical aspects. (AU)

Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment.

BACKGROUND: The use of human embryonic stem cells (ES cells) for the development of medical therapies is surrounded with moral concerns. The aim of this study was to assess the public's attitudes toward the use of ES cells for treatment of Parkinson's disease (PD) and other diseases, what factors are most important to consider when using ES cells for drug development, and if there is an association between religious beliefs and attitudes toward using ES cells for medical treatment. METHODS: A randomly selected sample of the Swedish public, aged 18-87-years-old, completed an online survey (n = 467). The survey assessed socio-demographics, religious views, perceived moral status of the embryo, and attitudes toward using ES cells for medical treatment of PD and other diseases. Adjusted odds ratios (ORs) and 95% confidence intervals (CI) for positive vs. negative attitude toward using ES cells for drug development were computed using logistic regression. RESULTS: The respondents were positive about using ES for treatment; specifically, 70% totally agreed that it is acceptable to use ES cells for treatment of PD, while 40% totally agreed that it is acceptable to use ES cells for treatment but induced pluripotent cells is just as efficient. Religion being of little importance in one's life was associated with a positive attitude toward using ES cells for treatment of PD (adjusted OR 6.39, 95% CI 2.78-14.71). The importance of being able "to access new, effective treatments against diseases that do not have any treatment available" was ranked as the most important factor to consider when using ES cells for drug development. CONCLUSION: Most respondents are positive about using ES cells for drug development, and making effective treatments accessible to those who do not have any. However, these attitudes are influenced by the specific disorder that the drug development is intended for, as well as the religious views and perceived moral status of the early embryo.

Análisis bioético (subjetivismo moral) desde la percepción de los clínicos sobre la situación de los embriones sometidos a fecundación in vitro. Quito-Ecuador / Bioethical analysis (moral subjectivism) from the perception of clinicians on the situation of embryos subjected to in vitro fertilization. Quito-Ecuador / Análise bioética (subjetivismo moral) a partir da percepção dos médicos sobre a situação dos embriões submetidos à fertilização in vitro. Quito-Equador

Resumen: Objetivo. Analizar las percepciones y prácticas de los clínicos en relación con el manejo del embrión sometido a técnicas de fecundación in vitro. Metodología. Cualitativa (subjetivista y fenomenológico). Se realizaron 15 las entrevistas semiestructuradas aplicando un muestreo por saturación dirigidas a personal clínico que haya participado en procedimientos de fecundación in vitro. Los datos se analizaron con el programa Atlas Ti 8.0®. Resultado. Los clínicos consideran al embrión como un ser humano o futuro ser humano y, además, merecedor de respeto y consideración, proponiendo incluso mejoras en los procesos de manipulación y almacenaje. Conclusión. Los embriones no son considerados como entes susceptibles de recibir daño, desde argumentos no solo técnicos sino éticos. Desde la corriente principialista, se describe la necesidad de promover actitudes de responsabilidad y prudencia para evitar el dogmatismo (objetivismo moral) proponiendo una postura deliberativa.

Abstract: The objective of this paper is to analyze the perceptions and practices of clinicians in relation to the management of embryos subjected to in vitro fertilization techniques. Methodology is Qualitative (subjectivist and phenomenological). A total of 15 semi-structured interviews were conducted using saturation sampling for clinical personnel who have participated in vitro fertilization procedures. The data is analyzed with the Atlas Ti 8.0® program. Results: Clinicians consider the embryo as a Human being or future human being, in addition, deserving of respect and consideration even proposing improvements in the processes of handling and storage. Conclusion. Embryos are not considered as entities susceptible of damage from not only technical but ethical arguments. From the principialist current, the need to promote attitudes of responsibility and prudence to avoid dogmatism (moral objectivism) is described, proposing a deliberative position.

Resumo: Objetivo. Analisar as percepções e práticas dos médicos em relação ao manejo do embrião submetido a técnicas de fertilização in vitro. Metodologia. Qualitativo (subjetivo e fenomenológico). Foram realizadas 15 entrevistas semiestruturadas por amostragem de saturação para pessoal clínico que participou de procedimentos de fertilização in vitro. Os dados são analisados com o programa Atlas Ti 8.0®. Resultado. Os médicos consideram o embrião como um ser humano ou futuro, além de merecer respeito e consideração, propondo até melhorias nos processos de manuseio e armazenamento. Conclusão. Os embriões não são considerados como entidades suscetíveis a receber danos não apenas de argumentos técnicos, mas éticos. A partir da corrente principialista, descreve-se a necessidade de promover atitudes de responsabilidade e prudência para evitar o dogmatismo (objetivismo moral), propondo uma posição deliberativa.

Perceptions on using surplus embryos for the treatment of Parkinson's disease among the Swedish population: a qualitative study.

BACKGROUND: Human embryonic stem cells are currently used for developing treatment against Parkinson's disease (PD). However, the use of ES cells is surrounded with moral concerns. Research regarding the public's attitudes can form an important basis for policymaking. The aim was to explore the perceptions of the public on using donated human embryos for developing treatment of Parkinson's Disease. METHODS: Semi-structured individual qualitative interviews were conducted with 11 members of the general population in Sweden. Interviews were analyzed with thematic content analyses. RESULTS: Four categories and additional sub-categories; Different views on the embryo requires delicacy, Using embryos to treat Parkinson's disease, Doing things in the right way, and Communication, media, and public opinion. In general, respondents were positive towards the usage of embryotic stem cells to treat PD, but the usage were conditioned and specific terms were demanded. Informed consent from both donors were required and delicacy and sensitivity when working with embryos were needed. CONCLUSIONS: It was perceived better to use surplus embryos to treat PD increase is than to discard them, also among those who perceived the embryo as "a potential life." The participants raised several conditions under usage for treatment should be allowed. Even if the embryos otherwise are going to be discarded, usage requires informed consent from the donating couples.

Discarding IVF embryos: reporting on global practices.

PURPOSE: To provide a global scale report on a representative sample of the clinical embryology community depicting the practice of discarding supernumerary IVF embryos. METHODS: A web-based questionnaire titled "Anonymous questionnaire on embryo disposal practices" was designed in order to ensure anonymous participation of practicing clinical embryologists around the world. RESULTS: During a data collection period of 8 months, 703 filled-in questionnaires from 65 countries were acquired. According to the data acquired, the majority of practitioners, dispose of embryos by placing them directly in a trash can strictly dedicated for embryo disposal for both fresh and frozen cycles (39% and 36.7% respectively). Moreover, 66.4% of practitioners discard the embryos separately-case by case-at different time points during the day. Over half of embryologists (54%) wait until day 6 to discard the surplus embryos, while 65.5% do not implement a specially allocated incubator space as a designated waiting area prior to disposal. The majority of 63.1% reported that this is a witnessed procedure. The vast majority of embryologists (93%) do not employ different protocols for different groups of patients. Nonetheless, 17.8% reported the request to perform a ceremony for these embryos. Assessing the embryologists' perspective, 59.5% of participants stated that the embryology practice would benefit from a universally accepted and practiced protocol. CONCLUSION(S): This study uniquely provides insight into global embryo disposal practices and trends. Results highlight the divergence between reported practices, while indicating the significance on standardization of practice, with embryologists acknowledging the need for a universally accepted protocol implementation.

The main will of the patients of a private Italian IVF clinic for their aneuploid/affected blastocysts would be donation to research: a currently forbidden choice.

PURPOSE: Surplus cryopreserved affected/aneuploid blastocysts may be obtained after in vitro fertilization (IVF) treatments with preimplantation genetic testing (PGT). These embryos are considered not suitable for transfer and may be discarded. Currently, in Italy, an embryo disposition decision (EDD) is not allowed and the frozen/vitrified blastocysts (even if affected/aneuploid) should be kept cryopreserved indefinitely. In this peculiar clinical, social, and legislative scenario, we aimed at assessing the attitudes of the patients towards the fate of these embryos, in case the local regulation would be changed and allow an EDD regarding the surplus affected/aneuploid embryos obtained after PGT. METHODS: A questionnaire with multiple answers was submitted to 832 patients who obtained affected/aneuploid embryos during a PGT cycle at our private IVF center. They were asked to choose between three putative options with related reasons: everlasting cryopreservation (only option currently available); discard or donate them to research. RESULTS: Overall, 149 patients (18%; 85 women and 64 men) answered the questionnaire. Among them, 84% (n = 126) would choose to donate their affected/aneuploid blastocysts to research, 9% (n = 13) would discard them and only 7% (n = 10) would keep them cryopreserved indefinitely. CONCLUSIONS: Donation of the affected/aneuploid blastocysts is the option chosen from most of the respondents (84%; 15% of the eligible patients). These patients are motivated from the altruistic will of incentivating the progress in IVF and/or stem cell research and supporting future couples to limit/solve their infertility/health issues.

'Compassionate transfer': an alternative option for surplus embryo disposition.

Compassionate transfer is a procedure wherein in vitro-created embryos are placed in a patient's cervix, vagina or uterus at an infertile period in the menstrual cycle where they are expected to perish. Patients report that they feel this procedure is a more natural means of disposition and provides them with the opportunity to grieve the loss of a potential child. However, some have argued that the procedure is an unnecessary, and illogical, addition to fertility treatment and that it detracts resources from medical care. Here, we introduce compassionate transfer as an alternative disposition option and argue that, for certain patients, it may constitute an ethical extension of fertility care that respects patient autonomy and psychosocial health.

Using Surplus Embryos and Research Embryos in Stem Cell Research: Ethical Viewpoints of Buddhist, Hindu and Catholic Leaders in Malaysia on the Permissibility of Research.

The sources of embryos for Embryonic Stem Cell Research (ESCR) include surplus embryos from infertility treatments, and research embryos which are created solely for an ESCR purpose. The latter raises more ethical concerns. In a multi-religious country like Malaysia, ethical discussions on the permissibility of ESCR with regard to the use surplus and research embryos are diversified. Malaysia has formulated guidelines influenced by the national fatwa ruling which allows the use of surplus embryos in ESCR. Input from other main religions is yet to be documented. In light of this, this study addresses (i) the ethical viewpoints of Buddhist, Hindu and Catholic leaders on the permissibility of using surplus and research embryos; and (ii) the moral standpoints of religious leaders towards attaining a consensus on the practice of ESCR in Malaysia. Responses from the religious leaders were obtained via semi-structured, face-to-face interviews. The findings show that generally the Buddhist and Hindu leaders approve the use of surplus embryos. Their responses on the creation of research embryos for ESCR are varied. Meanwhile, the Catholic leaders distinctively objected to ESCR regardless of the embryo sources, referring to it as the destruction of life. Taking into account the diverse views, this study explores the response of the religious leaders for a general consensus wherever possible. The ethical discourse surrounding ESCR in a multi-religious setting offers new perspective, which needs to be explored in a broader global community.

A Gift or a Waste? Quintavalle, Surplus Embryos and the Abortion Act 1967.

The destruction of an embryo must be justified in law. This is to prevent frivolous wastage and to show the respect afforded by the Warnock Report (1984). For example, embryonic destruction during pregnancy is underpinned by the Abortion Act 1967, and embryonic destruction during fertility treatment is regulated by the Human Fertilisation and Embryology Act 1990. However, following the appeal decision in R (Quintavalle) v Human Fertilisation and Embryology Authority (and Secretary of State for Health) [2005] 2 A.C. 561, embryos can now be created for a bone marrow tissue match to a sick sibling under the Human Fertility and Embryology Act 1990 according to the subjective desires of the mother. This opens the door to the first example of embryonic destruction on unique social-eugenic grounds with no clear lawful justification. It is argued that these embryos should be afforded a unique destruction provision under an amended version of section 1(1)(a) of the Abortion Act 1967 in light of their 'social-eugenic' nature. This would protect the Human Fertilisation and Embryology Authority from accusations of undercover eugenic practices and reinstate the respect shown towards embryos in law.

Are health care providers adequately educating couples for embryo disposition decisions?

OBJECTIVE: To determine the effectiveness of education provided by health care professionals during and after IVF treatment in preparing couples for surplus embryo disposition decisions. DESIGN: Cross-sectional survey. SETTING: University-affiliated fertility center. PATIENT(S): Couples with embryos cryopreserved for more than 2 years. INTERVENTION(S): Self-administered questionnaire. MAIN OUTCOME MEASURE(S): A Likert scale was used to rate the response to questions about patients' preparedness to make decisions regarding their surplus embryos. RESULT(S): The survey response rate was 70% (131 of 187). Education provided by health care professionals before initiating treatment met the needs of the majority of participants (n = 86). After treatment, the education received was not adequate to assist couples in making embryo disposition decisions. Of the 127 respondents who provided feedback on their intention for their cryopreserved embryos, 37% (n = 47) had no intention of using cryopreserved embryos for their own reproduction, 24% (n = 30) intended to use embryos for procreation, and the remaining 39% (n = 50) remained undecided regarding their future use of their embryos. Participants with more than 3 years of infertility (n = 49) were most likely to feel conflicted about the decision after treatment. CONCLUSION(S): The education received after treatment was considered inadequate. Couples with a long duration of infertility and those conflicted about final embryo disposition may be appropriate targets for further intervention. More written information and/or counseling services after treatment may help patients make informed and timely decisions regarding their surplus embryos.