CRISPR Parents and Informed Consent

Abstract

Clustered Regularly Interspaced Short Palindromic Repeat Associated System (CRISPR-Cas9) is evolving as a multi-faceted technology that can help in finding cures for rare diseases, as well as creating babies with geneedited cells. Yet, along with complex ethical questions, it also raises legal issues in numerous areas, from intellectual property to health to family law, and it has been the subject of philosophers, ethicists, scientists, as well as legal scholars.

The focus in this article is at the intersection of family law and health law. The argument assumes that CRISPR will be used (black market or otherwise), and focuses on the rights of parents to make decisions about health care for their children and the subsequent consequences for children. It argues for responsible use by parents, which, in turn, requires responsibility from health care providers in obtaining informed consent and an understanding from the parents concerning any procedures used. The two issues at the core of this article are parents' rights to make decisions concerning their potential children, and the need for informed consent to support parental choices.

The mere possibility of using CRISPR-Cas9 may have a profound change on how parents and the medical profession address preconception and prenatal intervention. Might doctors try to override decisions of parents? Can doctors override that type of decision based on the child's best interests? Might parents choose--or not choose--genetic enhancements just because they can, or because of expectations of what constitutes a good parent? Might children sue their parents for not having used CRISPR-Cas9? There has been some attention given to children's rights to sue providers for illnesses relating to medical involvement, but this article suggests that the real issues center on parents for choosing to engage in and risk their children's future health on a newly developing technology, and on health care providers for ensuring adequate understanding of the technology. The fear, now with a strong basis based on actual experiences, is that the technology will be used in practice before it has been well-validated for clinical use, and thus produce unexpected, and adverse, outcomes for any resulting children.

It is yet another example of a technology that has outpaced regulation. As CRISPR--and any other germline editing techniques--move forward, patients' rights to make informed decisions should be accorded significant attention and protection.

Keywords: CRISPR, genetic modification, parent, child