Ethics and Research with Children: A Case-Based Approach

By Eric Kodish | Go to book overview

7
The Ethics of Newborn Screening Diabetes Research

Lainie Friedman Ross


CASE DESCRIPTION

In January 2002, a Florida newspaper proclaimed that “Florida had taken a progressive step in becoming the first state offering to screen newborns for the risk of developing juvenile diabetes” (Infant diabetes, 2002). Screening involves identifying children with a genetic predisposition to type 1 diabetes. It is offered as a voluntary test in conjunction with the mandatory newborn metabolic screening. Infants discovered to be at increased risk are being recruited for follow-up studies to determine if and when the child develops autoantibodies (preclinical disease) or overt diabetes. No therapies to prevent or retard the development of type 1 diabetes exist, and no experimental therapies are part of the research proposal. Is the research proposal ethical?

Newborn screening for diabetes raises ethical issues at two levels. At the primary level, one asks whether an informed parent should give permission for her child's participation. This type of ethical inquiry focuses on what information is needed for informed consent, who is the proper person to grant permission for enrollment, and whether subjects are being recruited fairly. At the secondary or meta-ethical level, one asks whether parents should be asked to enroll their newborns. This type of ethical inquiry focuses on whether healthy newborns are the appropriate population for predictive genetic screening for conditions (1) in which testing only leads to knowledge of increased susceptibility and (2) for which no therapies exist.

If the meta-ethical question is answered affirmatively, one must examine the primary-level concerns. However, if the meta-ethical question is answered in the negative, then the first level concerns become moot. If the research protocol does not pass ethical research standards, then parental permission should not be sought. This is true regardless of how many parents might consent. In this chapter I will focus on the meta-ethical question. Although I answer it negatively, I will address the issue of parental permission because there are data to

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