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APHA Scientific Session and Event Listing

Recorded presentation

Rachel N. Grob, MA, PhD, Graduate Studies, Sarah Lawrence College, 1 Mead Way, Bronxville, NY 10708, 914 395 2371, rgrob@slc.edu

This presentation will summarize recently-conducted qualitative research with parents of children diagnosed with cystic fibrosis (CF) that was designed to examine psycho-social implications of expanded newborn genetic screening. Specific foci of the twenty-five interviews completed for this study included: how early diagnosis is changing parents' perceptions and experience of their children's disorders; how the lack of a “patient's/parent's right” to informed consent mediates the diagnostic process; how relationships between providers and parents are affected by newborn screening; and how newborn screening processes actually “feel” from parents' perspectives. A larger research study – to be conducted by the author and her co-investigator beginning in June 2006, with funding from the Robert Wood Johnson Foundation -- will also be described. Recently, technology has emerged that makes it easy and inexpensive to screen infants' heel blood for large numbers of disorders. Eagerly, and with unprecedented speed, policy-makers have seized the opportunity to add more and more new conditions to state newborn-screening panels. At the same time, the implications of this genetic information are increasingly complex and ambiguous, as illustrated by the example of CF, which has an unpredictable course and more than 1,000 gene mutations. The original research presented here illuminates under-examined aspects of the current technological shift in childhood genetic diagnostics; gives voice to a broader range of parental narratives about their experience of this shift than is generally found in either the popular or the scientific literature; and examines patients' rights in the context of this increasingly important mandatory public health program.

Learning Objectives:

• Participants will learn about recent developments in newborn screening policy, such as the current rapid expansion of state testing panels and the debates that surround it.
• Participants will deepen their understanding of critical issues in newborn screening - including its impact on intra-familial relationships and on relationships between parents and their health care providers -- through review of original research conducted by the author with parents of children receiving genetic diagnoses.
• Parents will broaden their analysis of this year's meeting topic "public health and human rights" by considering the impact on families of mandated newborn screening without a parental right to informed consent.

Keywords: Family/Consumer Perspective, Public Health Policy

Presenting author's disclosure statement:

Any relevant financial relationships? No

Recorded presentation