American Academy of Pediatrics Newborn Screening Task Force Recommendations: How Far Have We Come?

Lloyd-Puryear, Michele A.; Tonniges, Thomas F.; Dyck, Peter C. van; Mann, Marie Y.; Brin, Amy; Johnson, Kay; McPherson, Merle

doi:10.1542/peds.2005-2633b

Cited by 29 publications

(18 citation statements)

References 10 publications

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“…Comprehensive educational resources must also be made available to help obstetricians inform parents about NBS. Some suggest that a U.S. policy for NBS education and materials content would improve the quality of NBS resources and allow healthcare professionals to more easily provide NBS education [31]. Ensuring prenatal NBS education, thus, requires that public health and healthcare professionals work collaboratively to develop clear policies about NBS educational resources and define the roles of clinical providers in NBS education.…”

Section: Discussionmentioning

confidence: 99%

Parental Attitudes toward Ethical and Social Issues Surrounding the Expansion of Newborn Screening Using New Technologies

Hasegawa

Fergus

Ojeda

et al. 2010

Public Health Genomics

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Aims: This study assessed parent knowledge of newborn screening (NBS) and parent attitudes toward NBS for untreatable conditions, NBS for late-onset disorders and informed consent in NBS. Methods: Seventeen qualitative focus groups were held in Alaska, California, Hawaii, and Washington with mothers of children 10 years old or younger. Results: Most participants did not recall receiving information about NBS, and all wanted this information prenatally. In addition, most felt that the current system of ‘informed dissent’ was adequate, provided they were told about NBS prior to delivery. All women supported NBS for conditions that occur in infancy without a proven treatment. However, they disagreed about NBS for disorders that manifest in late childhood or adulthood. Conclusions: The results show a general consensus among the focus group participants about issues that cause dissent among public health and health care professionals. Parent attitudes differ from those of many professional communities with regard to timing of NBS education, informed consent, NBS for disorders that lack an effective treatment, and predictive testing of children for late-onset disorders. The results highlight the need to further research parent opinions about expanded NBS using new technologies and to include parents in the development of NBS policies.

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Section: Discussionmentioning

confidence: 99%

Parental Attitudes toward Ethical and Social Issues Surrounding the Expansion of Newborn Screening Using New Technologies

Hasegawa

Fergus

Ojeda

et al. 2010

Public Health Genomics

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“…Experiences from the implementation of newborn screening suggest that we need improved methods for involving parents (59, 83). Similarly, the implementation of P-WGS would benefit from finding ways to effectively integrate parents into the testing process.…”

Section: Strategic Planning For P-wgs Implementationmentioning

confidence: 99%

Growing Up in the Genomic Era: Implications of Whole-Genome Sequencing for Children, Families, and Pediatric Practice

Wade

Tarini

Wilfond

2013

Annu. Rev. Genom. Hum. Genet.

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Whole-genome sequencing (WGS) has advanced to a point where it is beginning to be integrated into pediatric practice. With little consensus on how to maximize the benefits of WGS for children, there is a growing need for focused efforts that connect researchers, clinicians, and families to chart a path forward. To illustrate relevant concerns, two contrasting applications of pediatric WGS are explored: clinical use with children who have undiagnosed conditions, and population-based screening. Specific challenges for health care services, policy development, and the well-being of children are discussed in light of current research. In the interest of ensuring evidence-based pediatric WGS, strategies are identified for advancing our understanding of what it means for children to grow up with WGS results guiding their health care.

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“…In 2004, HRSA funded the organization of seven regional collaboratives (RCs). Each state is a member of one of the RCs, the goal of which is “to promote the identification of shared areas of need, as well as data collection and information sharing among member states (69). ” In addition, the Secretary of Health and Human Services oversees the Discretionary Advisory Committee on NBS and Heritable Disorders in Newborns and Children (DACHDNC), which provides policy recommendations to state NBS programs.…”

Section: Advances In Newborn Screeningmentioning

confidence: 99%

Emerging Issues in Public Health Genomics

Roberts

Dolinoy

Tarini

2014

Annu. Rev. Genom. Hum. Genet.

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This review highlights emerging areas of interest in public health genomics. First, recent advances in newborn screening (NBS) are described, with a focus on practice and policy implications of current and future efforts to expand NBS programs (e.g., via next-generation sequencing). Next, research findings from the rapidly progressing field of epigenetics and epigenomics are detailed, highlighting ways in which our emerging understanding in these areas could guide future intervention and research efforts in public health. We close by considering various ethical, legal and social issues posed by recent developments in public health genomics; these include policies to regulate access to personal genomic information; the need to enhance genetic literacy in both health professionals and the public; and challenges in ensuring that the benefits (and burdens) from genomic discoveries and applications are equitably distributed. Needs for future genomics research that integrates across basic and social sciences are also noted.

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American Academy of Pediatrics Newborn Screening Task Force Recommendations: How Far Have We Come?

Cited by 29 publications

References 10 publications

Parental Attitudes toward Ethical and Social Issues Surrounding the Expansion of Newborn Screening Using New Technologies

Parental Attitudes toward Ethical and Social Issues Surrounding the Expansion of Newborn Screening Using New Technologies

Growing Up in the Genomic Era: Implications of Whole-Genome Sequencing for Children, Families, and Pediatric Practice

Emerging Issues in Public Health Genomics

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