Access to infertility care in Brazil: validation of a questionnaire for a bioethical discussion.

BACKGROUND: The World Health Organization characterizes infertility as a disease since 2009; however, in many countries, reproductive health is not prioritized. Characterizing a target population and knowing the barriers to accessing reproductive care may allow for a broadening of the discussion on how to provide equal opportunities. The objective of this study was to develop and validate a questionnaire that seeks to identify socioeconomic and cultural characteristics of Brazilian infertile couples to open the discussion on the principle of fair access to health. METHODS: (1) literature review in the main databases, (2) questionnaire elaboration by researchers within the areas of human reproduction and bioethics, concerned with content adequacy and comprehension, using the Google Forms online platform, (3) pilot study - the questionnaire was applied to 54 couples, over 18 years of age, that were seeking treatment for infertility and accepted to participate in the study and (4) statistical analysis - for continuous numerical variables, mean, standard deviation and 95% CI of the means were presented. For discrete numerical variables, median, interquartile range, minimum and maximum were presented. RESULTS: Forty-four questionnaires were fully completed and with adequate answers. The questionnaire proved to be objective and easy to understand. It was possible to obtain information on education, race of the couple, the impact of infertility on the couple's life, socioeconomic conditions, and the main difficulties in accessing medical care for treatment of infertility. CONCLUSION: The questionnaire proved to be feasible in collecting appropriate information to characterize a target population and the only limitation was that there was no academic expert evaluation prior to the pilot test.

The search for the principle of justice for infertile couples: characterization of the brazilian population and bioethical discussion.

BACKGROUND: Infertility is an increasingly prevalent disease in society and is considered by the World Health Organization to be a public health problem. An important ethical issue arises from the clarification of reproductive rights in a fair and equal way. The objective of this study was to deepen and update the knowledge and discussion about the difficulty of accessing infertility treatments in Brazil. METHODS: A cross-sectional observational study was carried out through the application of an online questionnaire that collected the socioeconomic characteristics of couples and identify how barriers to infertility care affect the most vulnerable populations. We included couples who sought medical assistance to achieve pregnancy at two clinics in the states of São Paulo and Minas Gerais. RESULTS: A total of 201 questionnaires were analyzed. Most couples self-declared as white and the average age of wives was 36 years and husbands 38 years. 65% (65%) of couples would proceed with the treatment in a different city to which they lived, 37% evaluated as having easy access to a medical specialist only after indication, and more than half of the participating have thought about giving up the treatment due to some difficulty in accessing it. 39% of participants sought more than one medical service to find better reception, 42% of couples sought more than one medical service to define where it would be better financially, and 67.2% referred to the high cost of treatments, that is, financial issues, as a great difficulty in accessing medical services and/or treatment. Although 72.6% of couples considered having a good quality of life, 54.2% admitted that infertility and the search for treatment generated anxiety/stress in the couple's life. CONCLUSION: There is a need for public education on reproductive health and for policymakers to raise awareness of the importance of the difficulty that many couples face in seeking treatment to become pregnant, especially in countries with less financial resources. Indeed, it is commonly accepted that there is a universal human right to access healthcare of appropriate quality as a matter of justice. Discussion of access to reproductive technologies should be considered taking into account the longstanding ethical debate regarding fertility, fecundity, and infertility, as well as reproductive care.

Shared Oocyte Donation: Ideas and Expectations in a Bioethical Context Based on a Qualitative Survey of Brazilian Women.

OBJECTIVE: Assisted reproduction combines innovative technologies and new forms of procreation through gamete donation; however, it also leads to moral and ethical issues and to the wide application of referential bioethics. The objective of the present study was to understand the bioethical context of shared oocyte donation. METHODS: The present qualitative study used the Collective Subject Discourse methodology to interview donors and recipients in Brazil. RESULTS: Donors suffer from infertility, and in vitro fertilization opens the possibility of having a child; however, the cost is high, and helping the recipient is more important than the financial cost. The recipients regret delaying motherhood; adopting a child is their last option, and they desire to feel the physical stages of pregnancy. The recipients find the rules unfair regarding the lack of an oocyte bank and the fact that the treatment must be performed in shared cycles; however, oocyte donation makes it possible to realize the common dream of motherhood. CONCLUSION: The obtained data showed that the patients are suffering and frustrated due to infertility, and they realize that in vitro fertilization may be the treatment they need. These women believe that children are essential in the constitution of the family, and scientific advances bring about innovative technologies and new forms of family constitution, with repercussions in the social, economic, political, and family contexts that lead to bioethical questions in Postmodernity.

OBJETIVO: A reprodução assistida agrega tecnologias inovadoras e novas formas de procriação por meio da doação de gametas; no entanto, também leva a questões éticas e morais e à ampla aplicação da bioética referencial. O objetivo deste estudo foi compreender o contexto bioético da doação compartilhada de oócitos. MéTODOS: Este estudo qualitativo utilizou a metodologia do Discurso do Sujeito Coletivo para entrevistar doadoras e receptoras no Brasil. RESULTADOS: As doadoras sofrem de infertilidade, e a fertilização in vitro abre a possibilidade de ter um filho; no entanto, o custo é alto, e ajudar a receptora é mais importante do que o custo financeiro. As receptoras se arrependem de retardar a maternidade; adotar uma criança é sua última opção, e elas desejam sentir os estágios físicos da gravidez. As receptoras consideram as regras injustas em relação à falta de um banco de oócitos e ao fato de que o tratamento deve ocorrer em ciclos compartilhados; no entanto, a doação de oócitos possibilita a realização do sonho comum da maternidade. CONCLUSãO: Os dados obtidos mostraram que as pacientes estão sofrendo e frustradas devido à infertilidade, e percebem que a fertilização in vitro pode ser o tratamento de que necessitam. Essas mulheres acreditam que as crianças são essenciais na constituição da família, e os avanços científicos agregam tecnologias inovadoras e novas formas de constituição familiar com repercussões nos contextos sociais, econômicos, políticos e familiares que levam a questões bioéticas na Pós-modernidade.

Shared oocyte donation: ideas and expectations in a bioethical context based on a qualitative survey of brazilian women / Doação compartilhada de oócitos: ideias e expectativas em um contexto bioético com base em um levantamento qualitativo de mulheres brasileiras

Abstract Objective Assisted reproduction combines innovative technologies and new forms of procreation through gamete donation; however, it also leads to moral and ethical issues and to the wide application of referential bioethics. The objective of the present study was to understand the bioethical context of shared oocyte donation. Methods The present qualitative study used the Collective Subject Discourse methodology to interview donors and recipients in Brazil. Results Donors suffer from infertility, and in vitro fertilization opens the possibility of having a child; however, the cost is high, and helping the recipient is more important than the financial cost. The recipients regret delaying motherhood; adopting a child is their last option, and they desire to feel the physical stages of pregnancy. The recipients find the rules unfair regarding the lack of an oocyte bank and the fact that the treatment must be performed in shared cycles; however, oocyte donation makes it possible to realize the common dream of motherhood. Conclusion The obtained data showed that the patients are suffering and frustrated due to infertility, and they realize that in vitro fertilization may be the treatment they need. These women believe that children are essential in the constitution of the family, and scientific advances bring about innovative technologies and new forms of family constitution, with repercussions in the social, economic, political, and family contexts that lead to bioethical questions in Postmodernity.

Resumo Objetivo A reprodução assistida agrega tecnologias inovadoras e novas formas de procriação pormeio da doação de gametas; no entanto, também leva a questões éticas e morais e à ampla aplicação da bioética referencial. O objetivo deste estudo foi compreender o contexto bioético da doação compartilhada de oócitos. Métodos Este estudo qualitativo utilizou a metodologia do Discurso do Sujeito Coletivo para entrevistar doadoras e receptoras no Brasil. Resultados As doadoras sofrem de infertilidade, e a fertilização in vitro abre a possibilidade de ter um filho; no entanto, o custo é alto, e ajudar a receptora é mais importante do que o custo financeiro. As receptoras se arrependem de retardar a maternidade; adotar uma criança é sua última opção, e elas desejam sentir os estágios físicos da gravidez. As receptoras consideramas regras injustas emrelação à falta de um banco de oócitos e ao fato de que o tratamento deve ocorrer emciclos compartilhados; no entanto, a doação de oócitos possibilita a realização do sonho comum da maternidade. Conclusão Os dados obtidosmostraram que as pacientes estão sofrendo e frustradas devido à infertilidade, e percebem que a fertilização in vitro pode ser o tratamento de que necessitam. Essas mulheres acreditam que as crianças são essenciais na constituição da família, e os avanços científicos agregam tecnologias inovadoras e novas formas de constituição familiar com repercussões nos contextos sociais, econômicos, políticos e familiares que levam a questões bioéticas na Pós-modernidade.