Parenting in the Age of Preimplantation Gene Editing

Abstract

Medical science at its core aims to preserve health and eliminate disease, but a common theme in scientific discovery is the application of findings in ways that were not the primary intent. The development of diagnostic modalities to predict the health of resulting children has been a fundamental aim underpinning research into prenatal and preimplantation diagnostic modalities; however, the knowledge gained has in some cases been utilized for nonmedical purposes. As an example, amniocentesis developed to determine whether the pregnancy is chromosomally normal also provides information about the sex of the fetus, which normally does not affect health. The emerging gene‐editing technologies that could be used to repair mutated disease‐causing genes in an embryo will presumably also be able to be used to alter traits unrelated to disease. And yet, I will argue, the desire to preserve the mystery of reproduction remains a central value in humans’ quest to reproduce. This yearning to maintain the mysteries will likely temper the development of strategies to alter our genome and affect the genetic identities of our offspring. In my experience as an obstetrician and reproductive endocrinology and infertility subspecialist, people want to have, not the best possible baby, but rather their own baby.

Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT)

“…The debate gradually shifted to focus more on the limits to genetic selection rather than the ethics of using PGT in the first place [47,48]. Arguments were raised, often in response to Savulescu, defending or opposing claims about parental and social moral obligation to select against diseases and disabilities or in favor of "good traits" [49][50][51]. Furthermore, at least 35 articles raised debates about genetic enhancement derived from hypothetical, non-proven uses of PGT to select non-medical traits [52][53][54].…”

State of the Science and Ethical Considerations for Preimplantation Genetic Testing for Monogenic Cystic Kidney Diseases and Ciliopathies

“…Dr. Sigal Klipstein, a practicing reproductive endocrinology and infertility specialist with extensive experience with PGT in the clinical setting, makes the case that individuals will not necessarily jump from one technology to another. 117 Thus, PGT-M will not innately lead to gene editing and the creation of 'designer babies.' Without a doubt, the decision to pursue PGT-M or other forms of ART is complex; some argue that such decision involves multiple stakeholders and ethical considerations that go beyond the immediate individuals seeking conception, while others argue that it is a private decision just requiring appropriate counseling.…”

‘Serious’ factor—a relevant starting point for further debate: a response

“…Furthermore, De Miguel Beriain questions the relevance of ‘serious’ in the context of HGGM, as preimplantation genetic testing (PGT) already exists and is more or less able to address concerns regarding serious diseases. Although PGT can be used to address the majority of conditions that could benefit from HGGM, there are certain situations, although a small number, where PGT simply does not work or is not an option for couples trying to have a biologically related child (eg, in Huntington’s disease, cystic fibrosis, Marfan syndrome or Translocation Down syndrome) 4–8. PGT acts by screening and selecting unaffected embryos, whereas HGGM could edit out heritable mutations.…”