Pediatricians’ Attitudes About Screening Newborns for Infectious Diseases
In 2002, the U.S. Health Resources and Services Administration (HRSA) commissioned the American College of Medical Genetics (ACMG) to recommend a uniform newborn screening (NBS) panel. The ACMG sent out a survey to stakeholders to evaluate 80 metabolic and genetic conditions and 3 infectious diseases (Human Immunodeficiency Virus (HIV), Toxoplasmosis (Toxo), and Cytomegalovirus (CMV)). In March 2005, the ACMG/HRSA report recommended a panel including 29 metabolic and genetic conditions and 25 secondary targets. This panel was endorsed by the newly-formed U.S. Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (Advisory Committee). Decisions about infectious diseases were deferred by the ACMG/HRSA committee due to limited survey responses and lack of expertise of surveyed stakeholders and committee members. The Advisory Committee has not pursued these conditions further. In this manuscript, we examine the attitudes of U.S. pediatricians toward targeted and universal screening of newborns for these three infectious diseases. Members of the American Academy of Pediatrics (AAP) sections of infectious disease (n = 150) and community pediatrics (n = 150) plus 13 contributors to the AAP Red Book were surveyed by email or fax. Of eligible pediatricians, 113 of 297 (38%) returned surveys. Seventy-four percent supported either targeted or universal NBS for HIV, 57% for Toxo, but only 42% for CMV. The majority of respondents support screening newborns for HIV and Toxo. The Advisory Committee ought to solicit a systematic evaluation of these conditions to determine whether they should be included in the uniform panel.
KeywordsNewborn screening Infectious diseases Physician attitudes Public policy
American Academy of Pediatrics
American College of Medical Genetics
- Advisory Committee
Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children
Highly Active AntiRetroviral Therapy
Human Immunodeficiency Virus
(U.S.) Health Resources and Services Administration
This research was done under the auspices of the Pritzker Summer Research Program which receives support from the University of Chicago Office of Medical Education and the National Institutes of Health. This research project was undertaken as part of a summer research program funded by the University of Iowa Carver College of Medicine.
- 1.Committee for the Study of Inborn Errors of Metabolism, Division of Medical Sciences, Assembly of Life Sciences, National Research Council. (1975). Genetic screening: Programs, principles, and research. Washington, DC: National Academy of Sciences.Google Scholar
- 2.National Newborn Screening and Genetics Resource. National newborn screening status report. Updated 22 Oct 2008. Retrieved Oct 30, 2008 from http://genes-r-us.uthscsa.edu/nbsdisorders.pdf.
- 3.American College of Medical Genetics (ACMG). Health Resources and Services Administration (HRSA). Newborn screening: Toward a uniform screening panel and system. Retrieved 30 Oct 2008 from ftp://ftp.hrsa.gov/mchb/genetics/screeningdraftforcomment.pdf.
- 4.National Newborn Screening and Genetics Resource. National newborn screening status report. Updated 7 Aug 2008. http://genes-r-us.uthscsa.edu/nbsdisorders.pdf.
- 6.(1999). Connecticut will test newborns if mother isn’t tested first. AIDS Policy & Law, 14(13), 7.Google Scholar
- 7.Anonymous. (2006). Testing. Illinois passes law requiring HIV tests for newborns. AIDS Policy & Law, 21(14), 2.Google Scholar
- 15.Nelson, H. D., Bougatsos, C., & Nygren, P. (2008). 2001 US preventive services task force. Universal newborn hearing screening: Systematic review to update the 2001 US preventive services task force recommendation. Pediatrics, 122(1), e266–e276. doi:10.1542/peds.2007-1422.CrossRefPubMedGoogle Scholar
- 16.Kemper, A. R., & Downs, S. M. (2000). A cost-effectiveness analysis of newborn hearing screening strategies. Archives of Pediatrics & Adolescent Medicine, 154, 484–488.Google Scholar
- 20.Acharya, K., Ackerman, P. D., & Ross, L. F. (2005). Pediatricians’ attitudes toward expanding newborn screening. Pediatrics, 116, e476–e484. Retrieved Oct 30, 2008 from http://pediatrics.aappublications.org/cgi/reprint/116/4/e476?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=1&author1=acharya+k&andorexacttitle=and&andorexacttitleabs=and&andorexactfulltext=and&searchid=1&FIRSTINDEX=0&sortspec=relevance&resourcetype=HWCIT.Google Scholar
- 22.Committee on Infectious Diseases American Academy of Pediatrics. (2005). Contributors. In L. K. Pickering (Ed.), Red Book: 2005 Report of the Committee on Infectious Diseases (27th ed.). Elk Grove Village IL: American Academy of Pediatrics.Google Scholar
- 23.Koopmans, J., Hiraki, S., & Ross, L. F. (2006). Comparative analysis of the attitudes of pediatricians and genetic counselors regarding testing and screening for CF and G6PD: Implications for counseling and policy. American Journal of Medical Genetics, 140A, 2305–2311. doi:10.1002/ajmg.a.31463.CrossRefGoogle Scholar
- 27.Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children. Retrieved Oct 30, 2008 from http://www.mchb.hrsa.gov/programs/genetics/committee/charter.htm.
- 28.Wilson, J. M. G., Jungner, F., & Principles and Practice of Screening for Disease. (1968). Public Health Papers, no. 34. Geneva: World Health Organization.Google Scholar
- 29.National Screening Committee. First Report of the National Screening Committee. Health Departments of the United Kingdom. April 1998. Retrieved Oct 30, 2008 from http://www.nsc.nhs.uk/pdfs/nsc_firstreport.pdf.
- 31.Lord, J., Thomason, M. J., Littlejohns, P., Chalmers, R. A., Bain, M. D., Addison, G. M., et al. (1999). Secondary analysis of economic data: A review of cost-benefit studies of neonatal screening for phenylketonuria. Journal of Epidemiology and Community Health, 53, 179–186.CrossRefPubMedGoogle Scholar
- 32.Pandor, A., Eastham, J., Beverley, C., Chilcott, J., Paisley, S. (2004). Clinical effectiveness and cost-effectiveness of neonatal screening for inborn errors of metabolism using tandem mass spectrometry: A systematic review. Health Technology Assessment (Winchester, England), 8(12), iii, 1–121.Google Scholar
- 37.Boyer, K. M., Holfels, E., Roizen, N., Swisher, C., Mack, D., Remington, J., et al. (2005). Risk factors for Toxoplasma gondii infection in mothers of infants with congenital Toxoplasmosis: Implications for prenatal management and screening. American Journal of Obstetrics and Gynecology, 192(56), 4–71.Google Scholar
- 38.Ricci, M., Pentimalli, H., Thaller, R., Rava, L., & Di Ciommo, V. (2003). Screening and prevention of congenital Toxoplasmosis: an effectiveness study in a population with a high infection rate. The Journal of Maternal-Fetal & Neonatal Medicine, 14, 398–403. doi:10.1080/14767050412331312250.CrossRefGoogle Scholar
- 41.McLeod, R., Boyer, K., Karrison, T., Kasza, K., Swisher, C., Roizen, N., et al. (2006). Outcome of treatment for congenital Toxoplasmosis, 1981–2004: the National Collaborative Chicago-Based, Congenital Toxoplasmosis Study. Clinical Infectious Diseases, 42, 1383–1394. doi:10.1086/501360.CrossRefPubMedGoogle Scholar
- 45.Stray-Pedersen, B., & Jenum, P. (1997). Economic evaluation of preventive programmes against congenital toxoplasmosis. Scandinavian Journal of Infectious Diseases Supplement, 84, 86–96.Google Scholar
- 46.U.S. Preventive Services Task Force (USPSTF). Guide to Preventive Services. Retrieved Oct 30, 2008 from http://www.ahrq.gov/clinic/uspstfix.htm.
- 49.McAuley, J., Boyer, K. M., Patel, D., Mets, M., Swisher, C., Roizen, N., et al. (1994). Early and longitudinal evaluations of treated infants and children and untreated historical patients with congenital toxoplasmosis: The Chicago collaborative treatment trial. Clinical Infectious Diseases, 18, 38–72.PubMedGoogle Scholar
- 56.Neto, E. C., Rubin, R., Schulte, J., & Giugliani, R. (2004). Newborn screening for congenital infectious diseases. Emerging Infectious Diseases, 10, 1069–1073.Google Scholar
- 63.Lin, L. S., Yager, J., & Leake, B. (1990). Professional vs. personal factors related to physicians’ attitudes toward drug testing. Journal of Drug Education, 20(95), 109.Google Scholar
- 64.Kinsella, T. D., & Verhoef, M. J. (1999). Determinants of Canadian physicians’ opinions about legalized physician-assisted suicide: A national survey. Annals of the Royal College of Physicians and Surgeons of Canada, 32, 211–215.Google Scholar
- 67.May, J. A., Warltier, D. C., & Pagel, P. S. (2002). Attitudes of anesthesiologists about addition and its treatment: a survey of Illinois and Wisconsin members of the American Society of Anesthesiologists. Journal of Clinical Anesthesia, 14, 284–289. doi:10.1016/S0952-8180(02)00359-8.CrossRefPubMedGoogle Scholar