Presented By:

Ruth M. Farrell, MD, MA, FACOG

ClevelandClinic

Department of Bioethics and OB/GYN

Abstract:

The translation of new genomic technology provides pregnant women and their partners a host of options for assessing the health of the developing fetus. New genomic technologies also provoke some of the most profound questions about identity, health, diversity, and community that become magnified in the context of prenatal testing. The rapidly growing panel of prenatal genetic tests places pregnant women in the role of “moral pioneers”, being the first in line to face the most troubling ethical challenges associated with the translation of genomic technologies.

Prenatal uses of genomic technologies are driven by the idea that more information is desirable. Yet, there is little data supporting that these notions are in line with pregnant women’s values or needs. Data show that patients face barriers to acquiring core information about the prenatal genetic tests currently in use, with women of lower socioeconomic status more likely to lack adequate understanding of key concepts. Even with educational mechanisms, genomic level information leads to unanswerable questions, leaving both patients and providers struggling to make clinical relevance of abnormalities identified in utero on future quality of life. Prenatal genomic testing also raises a concern about the potential for optional testing to evolve into an obligation, sending a message about the acceptability and tolerable limits of human diversity in the beginning stages of life. This is the time for proactive dialogue to address how the development of personalized medicine takes on unique set of ethical challenges for women, their partners, healthcare providers, and society.