RESUMO

With the increasing use of direct-to-consumer (DTC) genetic testing, several cases of fertility fraud have been uncovered throughout the world. A review of newspaper articles and specialized literature was made to analyze the issue of fertility fraud. The most famous cases, some of which are narrated in this article, became a scandal because they were committed by the doctors who treated the patients in question as a routine procedure in their medical practice. Some have been widely exposed in documentaries on streaming platforms, thereby raising awareness about a grave problem. The discussion focuses on the ambiguous regulation on the anonymity of donors, which has been one of the elements of the deception committed against the families using these services. Anonymity nowadays collides with the fascinating Pandora's box of transparency in genetic information that has been opened by DTC genetic testing.

RESUMO

In the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived (DC) individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one's genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory discourse (ethical recommendations and codes of practice). This analysis shows that the notion of narrative identity is suitable for defining and answering these questions. This review analyses the meaning of resemblance in DC families and the way donors are selected following affinity-ties and discusses disclosure strategies and agreements. As a preliminary conclusion, it could be said that, in the field of third-party reproduction, knowing about the donor conception significantly contributes towards the development of a narrative identity and also serves as a moral basis for the child's right to know.

Assuntos

RESUMO

Las técnicas de reproducción humana asistida, y en particular las heterólogas, plantean una serie de problemas que se ubican en el cruce tripartito de la ciencia, el derecho y la subjetividad. En este artículo investigamos la relación entre la legislación recientemente aprobada en Argentina respecto del anonimato relativo del donante y las respuestas de los usuarios de técnicas heterólogas -en este caso, la ovodonación-, en cuanto al derecho a conocer el origen genético. Analizamos el dilema entre el texto de la ley, que propicia la comunicación del origen genético al nacido mediante dichas técnicas, y los factores subjetivos que gravitan en la decisión de dar a conocer la información o guardar el secreto. En consecuencia, planteamos que la revelación del origen genético constituye una decisión ética que requiere asumir una responsabilidad subjetiva. Para abordar una problemática de tal complejidad ponemos a dialogar los datos relevados por dos estudios empíricos, con aportes teóricos tomados del Derecho, la bioética narrativa, la antropología y el psicoanálisis.

Assisted reproduction techniques, in particular of heterologous type, open a variety of issues in the intersection of science, rights and subjectivity. In this paper we focus on the relation between the recently approved Argentinian legislation and the responses given by users of heterologous techniques -in this case, oocyte donation- with regard to the right to know the genetic origin. We analyse the dilemma between the law, which promotes the communication of the genetic origin to the subject born by such techniques, and the subjective factors that gravitate in the decision either to disclose the information, or keep it as a secret. Consequently, we argue that the disclosure of the genetic origin is an ethical decision, which requires the assumption of subjective responsibility. To deal with such a complex issue, we cross the data obtained in two empirical studies with theoretical contributions from legal studies, narrative bioethics, anthropology and psychoanalysis.

As técnicas de reprodução humana assistida, e em particular as heterólogas, apresentam uma série de problemas que se localizam no cruzamento tripartite da ciência, do direito e da subjetividade. Neste artigo investigamos a relação entre a legislação recentemente aprovada na Argentina a respeito do anonimato relativo ao doador e as respostas dos usuários de técnicas heterólogas -neste caso, a ovodoação-, e quanto ao direito de conhecer a origem genética. Analisamos o dilema entre o texto da lei, que propicia a comunicação da origem genética ao nascido mediante referidas técnicas, e os fatores subjetivos que gravitam na decisão de dar a conhecer a informação ou guardar o segredo. Em consequência, propomos que a revelação da origem genética constitui uma decisão ética que requer assumir uma responsabilidade subjetiva. Para abordar uma problemática de tal complexidade colocamos a dialogar os dados relevados por dois estudos empíricos, com contribuições teóricas tomadas do Direito, da bioética narrativa, da antropologia e da psicanálise.

Assuntos