6 - Noninvasive Prenatal Genome Sequencing

Summary

Non-Invasive Prenatal Testing (NIPT) allows testing fetal DNA in pregnant women’s blood early in pregnancy and can technically be used to sequence the whole genome of the fetus (NIPW). This chapter explores the implications of NIPW in cases where the pregnancy is not terminated, but rather a child is born about whom vast amounts of genetic information are known. To protect the child’s ‘open future’ parents usually do not have the right to genetically test minors for conditions unless they are childhood-affecting. If applied to NIPW, this reasoning means that information that is not clinically useful during pregnancy or childhood should not be disclosed. However, in the context of pregnancy, the fetus has no rights to privacy. On the other hand, some have argued that concerns about open future and autonomy are misguided, because genetic knowledge does not deprive a child of open future and because nobody possesses a ‘right not to know’ genetic information. These two opposing approaches demonstrate that NIPW requires a new conceptual framework. This chapter thus explores possible mechanisms that balance the reproductive autonomy of the pregnant woman against the interests of the prospective child and discusses their advantages and disadvantages.