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It Is Time to Consult the Children: A Mother Who Faced Mitochondrial Replacement and Her Son Consider the Limits of Genetic Modification

Debate over the ethics of genetic modification of children born using In Vitro Fertilization (IVF) and other reproductive technologies has raged for years without including those most directly living with the consequences of assisted reproduction—the children themselves. In the last four decades, millions have been born using IVF (Science News 2018). Yet analyses of the ethics of genetic modification in reproduction continue to overlook the importance of consulting these children, including those whose parents faced decisions about genetic modification (e.g., Cwik 2020; NASEM 2016). So far, deliberate genetic modification in human reproductive technology has been limited. However, in the late 1990s, a small cohort of women seeking to conceive were offered mitochondrial replacement therapy (MRT) (Kula 2016). This technique modifies the genetic makeup of the offspring by creating a child with three genetic forebears—the sperm source, source of the ovum nucleus, and source of the mitochondria, which have their own genomes. This produces a phenomenon not seen in nature, a child with three genetic parents. Other genetic modification of children being conceived has been debated, including somatic gene alteration, historically overseen by the Recombinant DNA Advisory Committee at NIH and the Food and Drug Administration (FDA). Both bodies have refused to consider protocols involving germline genetic alteration, but illicit use of that technology to conceive twin girls in China has prompted an outpouring of ethics guidelines (e.g., Lander et al. 2019). Remarkably, virtually none of the analyses and guidelines offered have consulted the children—now adults—born using reproductive technologies. This is a glaring omission. A recognized ethics challenge posed by reproductive technologies is that decisions about use involve only the aspiring parents, clinicians, and researchers. No child-to-be can be consulted when their conception and potential genetic modification is planned. Even after the child is born, philosophers have argued that the child cannot complain of the circumstances of their conception, as without that conception the child would not exist at all (Parfit 1984). All of this has stymied the essential next step in ethical consideration of assisted reproduction involving genetic modification—consulting the community of offspring born using assisted reproduction, including those whose parents used or considered genetic modification. IVF children have been studied extensively, but usually as objects for health and psychological assessment (Wilson et al. 2011). They have not been consulted as crucial partners in formulating ethical policy.