PEDIATRICS Vol. 115 No. 2 February 2005, pp. 514-515 (doi:10.1542/peds.2004-2458)
There Might Be Gold at the End of the Rainbow: In Reply
Christopher Cunniff, MDDepartment of Pediatrics
University of Arizona College of Medicine
Tucson, AZ 85724-5073
"Prenatal Screening and Diagnosis for Pediatricians"1 is published as a clinical report, intended to provide guidance to the clinician in rendering pediatric care. The report clearly identifies the risks and benefits of prenatal diagnosis and screening procedures at an appropriate level for pediatric practice. Cost-benefit analyses are far beyond the scope of such a statement and are not pertinent to pediatric practice, which does not involve prenatal diagnostic procedures.
Dr Chilton takes issue with our assertion that prenatal diagnosis is indicated whenever certain high-risk situations arise. In this context it is important to recognize that prenatal diagnosis is not just a procedure, it is a process that involves pretest counseling, history taking, physical examination, clinical procedures, laboratory testing, and posttest counseling. Responsible and prudent practice requires at-risk families to be informed of prenatal diagnosis options and to be provided avenues to their access. Some will decline and some will accept all or part of the services offered, based on the counseling provided to them, the specific medical, social, emotional, and spiritual circumstances of the family, and the nature of the risk. The suggestion that certain prenatal diagnostic procedures should not be offered unless the family is willing to abort the pregnancy fails to recognize and acknowledge the many other important benefits that can be realized through knowing whether the fetus is affected with disorders such as sickle cell anemia and Down syndrome, to use Dr Chilton's examples. Knowledge of such diagnoses can help families prepare emotionally for the task of raising a child with a disability, because they will have time to educate themselves about the nature of the disorder and its possible medical, social, and educational complications. They can explore support groups specific to that diagnosis and tap into a network of support and advocacy instead of approaching these issues in the crisis atmosphere of a birth hospital. This knowledge also allows families to make appropriate decisions about insurance; for example, the primary earner may choose to remain in a particular job with broad health insurance benefits rather than change to another job with a less secure health insurance plan. If the child will have special education needs, the parents may choose to live in a locale that has a school district known to have superior special education programs; and if the child will have significant medical needs, they may choose to live near a tertiary medical center and the subspecialists who will be involved in their child's care. To reduce the benefits of prenatal diagnosis to the narrow scope of pregnancy termination, fetal treatment, or emergent newborn treatment is to adopt a purely medical approach to a situation that reverberates with social, financial, educational, occupational, emotional, and familial issues that need to be recognized if one wishes to examine the utility of such a process in an informed and balanced manner.
It is unfortunate that Dr Chilton's colleagues in the emergency department at Lovelace Medical Center often order tests that, in his opinion, are unnecessary. We share his concerns about this kind of practice and what it may mean for future health care costs. He goes on to suggest that this clinical report presents an analogous situation, one that does not reflect a responsible or judicious approach to genetic testing, and on this point we most wholeheartedly disagree. For each prenatal diagnostic procedure that is presented in this report, there is an appropriately detailed and referenced discussion of the associated advantages, disadvantages, and risks of the procedure. The major benefit is also well documented, namely to know whether the fetus is affected or unaffected. Although Dr Chilton has chosen to approach this issue from the calculus of a strict medical model, we believe that such a model fails to embrace the full spectrum of risks and benefits that need to be considered in any responsible, compassionate, and thorough analysis of the systems that provide care and support for children and their families.
REFERENCE
- Cunniff C; American Academy of Pediatrics, Committee on Genetics. Prenatal screening and diagnosis for pediatricians.
Pediatrics. 2004;114
:889
–894
[Abstract/Free Full Text]
PEDIATRICS (ISSN 1098-4275). ©2005 by the American Academy of Pediatrics
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Related articles in Pediatrics:
- There Might Be Gold at the End of the Rainbow
- Lance Chilton
Pediatrics 2005 115: 514.[Extract] [Full Text]
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