Bioethics proposal for prenatal whole genome sequencing raises lively debate

prenatal-genome-sequencing
Credit: Ernesto del Aguila III, NHGRI.

The latest issue of the American Journal of Bioethics includes a target article by Stephanie C. Chen and David T. Wasserman entitled, “A Framework for Unrestricted Prenatal Whole-Genome Sequencing: Respecting and Enhancing the Autonomy of Prospective Parents.” As you might imagine, several PIRC members were prompted to submit open peer commentaries in response, so PIRC is well-represented in this lively debate, as you can see:

Stephanie Kraft prefaces the target article and responses with a thoughtful editorial, titled “Modern Pregnancies and (Im)Perfect Babies,” in which she reflects on her own pregnancy and on the need to include the voices of pregnant women as crucial stakeholders in considering new technologies and policies for prenatal testing.

Megan Allyse and Marsha Michie, with co-author James P. Evans, contribute a commentary titled “Dr. Pangloss’s Clinic: Prenatal Whole Genome Sequencing and a Return to Reality,” in which they argue that Chen and Wasserman’s proposal ignores the clinical realities of prenatal care and prenatal testing.

Jessica Mozersky and Pamela Sankar question the utility of Chen and Wasserman’s proposed mandatory pre-test education session, and its underlying assumptions about rational and moral decision-making during pregnancy, in their commentary titled “Mandating Moral Reflection?”.

Vardit Ravitsky, with co-authors Francois Rousseau and Anne-Marie Laberge, critique both the proposed test (particularly the clinical utility and cost effectiveness of a test that will almost certainly have low predictive value) and Chen and Wasserman’s proposed consent process, in their commentary titled “Providing Unrestricted Access to Prenatal Testing Does Not Translate to Enhanced Autonomy.”

These PIRC scholars’ commentaries are in good company: several other commentaries appear alongside them, contributed by Tom Shakespeare, Nancy Rose, Jeff Botkin, Ben Wilfond, Chris Kaposy, and other respected scholars in this field. While many scholars have raised ethical issues regarding prenatal whole genome sequencing in recent years, this new journal issue is the first to consider a proposed framework for offering such testing, along with an array of arguments in support of and against various aspects of this framework.

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