The dynamics of reproductive genetic technologies: now and in the future:Perspectives of stakeholders

Autor: van Dijke, Ivy
Jazyk: angličtina
Rok vydání: 2022
Předmět:
Zdroj: van Dijke, I 2022, ' The dynamics of reproductive genetic technologies: now and in the future : Perspectives of stakeholders ', Doctor of Philosophy, s.l. . < https://hdl.handle.net/1871.1/8aa737d3-7c0f-488a-ab15-e03f56a96e69 >
van Dijke, I 2022, ' The dynamics of reproductive genetic technologies: now and in the future : Perspectives of stakeholders ', PhD, Vrije Universiteit Amsterdam, s.l. .
Popis: The field of reproductive genetic technology is changing rapidly due to the introduction of new technologies and the widening scope of currently available tests. These developments challenge current policy and standards of care, and might impact the reproductive decision-making process itself. In the Netherlands, couples with a known increased risk of having a child with a genetic condition currently have several options available if they want to avoid the birth of an affected child. Among others they can opt for prenatal diagnosis (PND), where the fetal DNA is tested during pregnancy and, if the fetus is affected, couples can decide to terminate the pregnancy or prepare for a child with the genetic disorder. In addition, couples can opt for preimplantation genetic testing (PGT), in which the oocytes are fertilized by in vitro fertilization (IVF) /intracytoplasmatic sperm injection (ICSI) in the laboratory. After genetic testing on a single cell or a few cells of the embryo, an unaffected embryo is eligible for transfer into the uterus. New technologies are on the horizon; such as non-invasive prenatal diagnosis (NIPD) that is likely to become available in the (near) future and currently conducted as part of a pilot study the Netherlands. The implementation of germline genome editing (GGE) is still far away from clinical use. Currently, this technology is prohibited worldwide and, in the Netherlands, research on embryos is subject to strict regulation. Availability of somatic gene editing (SGE) after the birth of an affected child is also a future technology that could impact reproductive decision making before pregnancy. Couples can be informed about their risk of having affected offspring at different stages in time: after the birth of an affected child, during pregnancy when congenital anomalies are seen by ultrasound examination, or when prenatal diagnostic testing confirms a genetic diagnosis. Preconception carrier screening enables couples to obtain information about a possible increased risk of having a child with a recessive disorder before pregnancy, which allows for a wider range of reproductive options than testing performed after conception. Expanded carrier screening (ECS) test panels allow screening for multiple conditions concurrently, enabling the possibility of a universal offer for all couples planning a pregnancy. In the Netherlands, apart from ECS offers at two academic hospitals, carrier screening for the general population is not yet implemented in nationwide healthcare. This thesis explored the dynamics of currently available and evolving reproductive and genetic technologies by examining the perspectives of various stakeholders with the aim of attuning responsible implementation. Responsible implementation of new reproductive genetic technologies requires a thorough reflection on desirability, demand and values. This thesis therefore aimed to gain more insight into the views on current and potential reproductive technologies of four relevant stakeholder groups: couples with an increased risk of having offspring with a genetic condition, couples who want to have children, the general public and professionals working in the field of reproductive and/or genetic medicine. Rapid scientific advances driving new reproductive genetic technologies will shift the existing balance of available techniques. The perspectives of stakeholders involved with these currently available (e.g. PGT) and possibly future available (e.g. NIPD) technologies constitute a valuable body of research on the underlying opinions, beliefs and values that can be used to assist in drafting appropriate policy and regulations guiding responsible implementation of new reproductive genetic technologies. This thesis shows the value of elucidating the views of stakeholders involved and stresses the importance of continuously engaging prospective parents and the general public in the discussions.
Databáze: OpenAIRE
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