Gene editing is a type of genetic engineering that enables scientists to change an organism’s DNA by adding, removing, or altering genetic material at particular locations in the human genome. While these editing technologies are in their infancy, they hold great promise for future applications. They also raise many moral, ethical, and legal questions.
Fast forward 10 years. In utero gene editing is effective, safe, and inexpensive (or covered by insurance). A couple with strong religious views against gene editing decides to procreate despite knowing, via family history, they are both homozygous dominant for the allele that causes Huntington’s disease (an autosomal dominant disease), and therefore the child will have a 100% likelihood of inheriting the disease (barring a highly unlikely, unforeseen mutation eliminating the inherited disorder). The couple undergoes genetic testing of the fetus, which confirms the fetus is homozygous dominant for Huntington’s disease. The couple’s physician recommends a gene editing treatment to “fix” the fetus’s genes. The couple declines the treatment on religious grounds, knowing full well the spectrum of health risks and symptoms their child will face. The child is born with Huntington’s disease and suffers the expected health issues. Safe post-birth gene therapy for Huntington’s is not available.
In a situation like the one above, what liability do parents face if there is a state statute requiring gene editing in circumstances such as these? If there is no such statute, should courts determine that parents have an affirmative duty, via existing common law principles governing “special relationships,” to acquiesce to these procedures during pregnancy to avoid almost certain postnatal injury? If so, what genetic issues are important enough for this affirmative duty to be imposed? What criminal liability do parents potentially face under existing causes of action? What types of civil actions might the affected child bring against his or her parent(s)? Does the state or the child even have the standing to bring a suit? If the standing requirement is met, how might courts reconcile parents’ potential affirmative duty to acquiesce to gene editing treatment with parents’ constitutionally-based arguments in opposition (e.g., free exercise of religion, privacy rights under Roe v. Wade and its progeny, etc.)? These questions, and related topics, are addressed below.