Values clarification and parental decision making about newborn genomic sequencing.

Peinado S1, Paquin RS1, Rini C2, Roche M3, Butterfield RM3, Berg JS3, Powell CM3, Bailey DB4, Lewis MA1.

Author information

1: Center for Communication Science.
2: John Theurer Cancer Center.
3: University of North Carolina School of Medicine.
4: Center for Newborn Screening, Ethics, and Disability Studies.

Abstract

OBJECTIVE:

Using an online decision aid developed to support parental decision making about newborn genomic sequencing, we tested whether adding a values clarification exercise to educational content would improve decision making outcomes and influence intention to pursue genomic sequencing. We also examined whether the effect of values clarification varied depending on one's health literacy level.

METHOD:

In an online experiment, women and men aged 18 to 44 who were either pregnant or had a pregnant partner, were currently trying to get pregnant, or were preparing for a pregnancy within the next 2 years were randomly assigned to complete either a decision aid with educational information about newborn genomic sequencing or a decision aid with the same educational information and a values clarification exercise.

RESULTS:

Of the 1,000 participants who completed the decision aid, those who completed the values clarification exercise reported less decision regret, F(1, 995) = 6.19, p = .01, and were clearer about their personal values, F(1, 995) = 6.39, p = .01. Moderation analyses revealed that the benefit of values clarification on decisional conflict was particularly evident among participants with lower health literacy, B = -3.94, SE = 1.67, t = -2.36, p = .018. There was not a significant moderation effect of health literacy and decision aid condition on decision regret.

CONCLUSIONS:

Adding a values clarification exercise to decision aids for parents making decisions about genomic sequencing may improve the decision-making experience and provide some benefit to individuals with lower health literacy. (PsycINFO Database Record (c) 2019 APA, all rights reserved).