We read with interest Palmor and Fiester’s recent article arguing for a blanket ban on reporting incidental findings of nonparentage (IFNP) when conducting pediatric genetic testing.1 The decision whether to disclose IFNP creates disruptions in clinical care, they argue, because it “undermines consistency, transparency, and uniformity across the institution or practice” (p. 184) and places the “moral burden” of these decisions on health care providers, where they do not belong (p. 187).
This argument is reminiscent of the 2013 recommendations by the American College of Medical Genetics (ACMG), which recommended uniformly returning 57 actionable genetic findings from whole genome and whole exome sequencing (WGS/WES). The recommendations (since revised) noted that parents had the option to refuse WGS/WES if they were not interested in receiving information about these 57 conditions.2 Like Palmor and Fiester, the ACMG argued for institutional consistency in the selection of its predetermined panel because it was too burdensome for physicians to decide which results to return.
One common thread for these arguments is that allowing for autonomous decision-making places too much of a burden on physicians, institutions, and parents. The ACMG argued that “to respect preferences in the same manner as with targeted testing . . . the patient . . . would have to undergo an extensive, and possibly overwhelming, amount of genetic counseling.”3 Palmor and Fiester, in contrast, argue that parents should not be expected to make decisions about IFNP when seeking a diagnosis, saying, “The clinician’s and parents’ focus in that instance should remain on the clinical condition, not on the separate, life-altering finding of nonpaternity or nonmaternity.”1 This approach does not constitute paternalism, they say, because the clinician has not asked for the parents’ view on returning results and therefore is not consciously overriding them.
We find these arguments troubling. To deny someone the opportunity to express a preference then deny that it is paternalistic to ignore that preference, is moral sophistry. Furthermore, to presume to tell parents where their time and energy should be focused while shepherding their child’s genetic testing is simply condescending. It is true that patient autonomy is hard. It is hard for patients, who often feel overwhelmed. It is hard for providers, who may feel a commendable desire to ease patients’ emotional burden. It is hard for health care systems, which must devote additional resources to the consequences of patient choices. However, none of these difficulties make it ethically acceptable to prioritize assumed beneficence over autonomy.
We share Palmor and Fiester’s conviction that many parents, perhaps most, do not want this information. However, most parents are not all parents, and clinicians have a responsibility to give individuals the opportunity to choose whether they would like to know about IFNP or any other category of finding. How, and to what extent, any additional costs are passed along to payors is a worthwhile subject for debate, but these concerns do not justify abandoning patient autonomy in the name of efficiency and false beneficence.
Conflict of Interest:None declared
- Copyright © 2015 by the American Academy of Pediatrics