Parental views on expanded newborn screening using whole-genome sequencing

Pediatrics

Volumn 137, Issue , 2016, Pages S36-S46

  Joseph, Galen ^a   Chen, Flavia ^a   Harris Wai, Julie ^a,b   Puck, Jennifer M ^a   Young, Charlotte ^a   Koenig, Barbara A ^a  

^a UNIVERSITY OF CALIFORNIA   (United States)

^b DIVISION OF RESEARCH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CHILD PARENT RELATION; CONTROLLED STUDY; ETHNICITY; FEMALE; GENE SEQUENCE; GENETIC PRIVACY; GENOMICS; HEALTH CARE POLICY; HEALTH PROGRAM; HUMAN; HUMAN GENOME; IMMUNE DEFICIENCY; INFANT; INFORMED CONSENT; NEWBORN; NEWBORN SCREENING; PARENTAL ATTITUDE; PEDIATRICS; PREGNANT WOMAN; PRIORITY JOURNAL; RISK BENEFIT ANALYSIS; SOCIAL STATUS; TRUST; ADOLESCENT; ADULT; ATTITUDE TO HEALTH; DNA SEQUENCE; EXOME; GENETIC PREDISPOSITION; GENETIC SCREENING; GENETICS; HIGH THROUGHPUT SEQUENCING; INFORMATION PROCESSING; INFORMATION RETRIEVAL; PARENT; PATIENT PARTICIPATION; PHARMACOGENETICS; PREGNANCY; PSYCHOLOGY; YOUNG ADULT;

ADOLESCENT; ADULT; ATTITUDE TO HEALTH; EXOME; FEMALE; FOCUS GROUPS; GENETIC PREDISPOSITION TO DISEASE; GENETIC PRIVACY; GENETIC TESTING; GENOME, HUMAN; HIGH-THROUGHPUT NUCLEOTIDE SEQUENCING; HUMANS; INFANT, NEWBORN; INFORMATION STORAGE AND RETRIEVAL; INFORMED CONSENT; NEONATAL SCREENING; PARENTS; PATIENT PARTICIPATION; PHARMACOGENETICS; PREGNANCY; SEQUENCE ANALYSIS, DNA; TRUST; YOUNG ADULT;

EID: 84957676835     PISSN: 00314005     EISSN: 10984275     Source Type: Journal    
DOI: 10.1542/peds.2015-3731H     Document Type: Article

References (44)

1. Goldenberg AJ, Sharp RR. The ethical hazards and programmatic challenges of genomic newborn screening. JAMA. 2012; 307(5): 461-462
2. The President's Council on Bioethics. The changing moral focus of newborn screening: An ethical analysis by the President's Council on Bioethics. Washington, DC 2008 Available at: Http://hdl. handle. net/10822/559367 Accessed November 24, 2015.
3. ACMG Newborn Screening Expert Group. Newborn screening: Toward a uniform screening panel and system- -executive summary. Pediatrics. 2006; 117(5 Pt 2): S296-307
4. Clayton EW. Currents in contemporary ethics: State run newborn screening in the genomic era, or how to avoid drowning when drinking from a fire hose. J Law Med Ethics. 2010; 38(3): 697-700
5. Campbell E, Ross LF. Parental attitudes and beliefs regarding the genetic testing of children. Community Genet. 2005; 8(2): 94-102
6. Hasegawa LE, Fergus KA, Ojeda N, Au SM. Parental attitudes toward ethical and social issues surrounding the expansion of newborn screening using new technologies. Public Health Genomics. 2011; 14(4-5): 298-306
7. Schmidt JL, Castellanos-Brown K, Childress S, et al. The impact of falsepositive newborn screening results on families: A qualitative study. Genet Med. 2012; 14(1): 76-80
8. Burke W, Tarini B, Press NA, Evans JP. Genetic screening. Epidemiol Rev. 2011; 33(1): 148-164
9. Almond B. Genetic profiling of newborns: Ethical and social issues. Nat Rev Genet. 2006; 7(1): 67-71
10. Miller FA, Hayeems RZ, Bombard Y, et al. Clinical obligations and public health programmes: Healthcare provider reasoning about managing the incidental results of newborn screening. J Med Ethics. 2009; 35(10): 626-634
11. Tarini BA, Goldenberg AJ. Ethical issues with newborn screening in the genomics era. Annu Rev Genomics Hum Genet. 2012; 13(1): 381-393
12. Levy HL. Newborn screening: The genomic challenge. Mol Genet Genomic Med. 2014; 2(2): 81-84
13. Landau YE, Lichter-Konecki U, Levy HL. Genomics in newborn screening. J Pediatr. 2014; 164(1): 14-19
14. Meade C, Bonhomme NF. Newborn screening: Adapting to advancements in whole-genome sequencing. Genet Test Mol Biomarkers. 2014; 18(9): 597-598
15. Lewis MH. Lessons from the residual newborn screening dried blood sample litigation. J Law Med Ethics. 2015; 43(suppl 1): 32-35
16. Botkin JR, Rothwell E, Anderson R, et al. Public attitudes regarding the use of residual newborn screening specimens for research. Pediatrics. 2012; 129(2): 231-238
17. Hendrix KS, Meslin EM, Carroll AE, Downs SM. Attitudes about the use of newborn dried blood spots for research: A survey of underrepresented parents. Acad Pediatr. 2013; 13(5): 451-457
18. Davis TC, Humiston SG, Arnold CL, et al. Recommendations for effective newborn screening communication: Results of focus groups with parents, providers, and experts. Pediatrics. 2006; 117(5 pt 2): S326-S340
19. Newborn Screening Saves Lives Reauthorization Act of 2014, 42 U.S.C. 300b-8 to 300b-17 (2014)
20. Etchegary H, Dicks E, Green J, Hodgkinson K, Pullman D, Parfrey P. Interest in newborn genetic testing: A survey of prospective parents and the general public. Genet Test Mol Biomarkers. 2012; 16(5): 353-358
21. Etchegary H, Dicks E, Hodgkinson K, Pullman D, Green J, Parfey P. Public attitudes about genetic testing in the newborn period. J Obstet Gynecol Neonatal Nurs. 2012; 41(2): 191-200
22. Lipstein EA, Nabi E, Perrin JM, Luff D, Browning MF, Kuhlthau KA. Parents' decision-making in newborn screening: Opinions, choices, and information needs. Pediatrics. 2010; 126(4): 696-704
23. Miller FA, Hayeems RZ, Carroll JC, et al. Consent for newborn screening: The attitudes of health care providers. Public Health Genomics. 2010; 13(3): 181-190
24. Goldenberg AJ, Dodson DS, Davis MM, Tarini BA. Parents' interest in wholegenome sequencing of newborns. Genet Med. 2014; 16(1): 78-84
25. Waisbren SE, Bäck DK, Liu C, et al. Parents are interested in newborn genomic testing during the early postpartum period. Genet Med. 2015; 17(6): 501-504
26. Plass AM, van El CG, Pieters T, Cornel MC. Neonatal screening for treatable and untreatable disorders: Prospective parents' opinions. Pediatrics. 2010; 125(1). Available at: Www. pediatrics. org/cgi/content/full/125/1/e99
27. Genetic Alliance.2014What to Expect From Your Baby's First Test. Available at: Https://youtu. be/6skxqLUjFDg Accessed November 24, 2015.
28. Newborn Screening Branch. Important information for parents about the Newborn Screening Test. California Department of Public Health: Genetic Disease Screening Program; 2013
29. King JS, Smith ME. Whole genome screening of newborns? The constitutional boundaries of state newborn screening programs. Pediatrics. 2016; 136(supp 1): E20153731D
30. Corbin J, Strauss A. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. Thousand Oaks, CA: Sage Publications; 2014
31. Attride-Stirling J. Thematic networks: An analytic tool for qualitative research. Qual Res. 2001; 1(3): 385-405
32. Notice of Proposed Rule Making. Federal Policy for the Protection of Human Subjects, 80 Fed. Reg. 53933 (September 8)2015
33. Kaufman DJ, Murphy-Bollinger J, Scott J, Hudson KL. Public opinion about the importance of privacy in biobank research. Am J Hum Genet. 2009; 85(5): 643-654
34. Vermeulen E, Schmidt MK, Aaronson NK, et al. A trial of consent procedures for future research with clinically derived biological samples. Br J Cancer. 2009; 101(9): 1505-1512
35. Trinidad SB, Fullerton SM, Ludman EJ, Jarvik GP, Larson EB, Burke W. Research ethics: Research practice and participant preferences: The growing gulf. Science. 2011; 331(6015): 287-288
36. Simon CM, L'heureux J, Murray JC, et al. Active choice but not too active: Public perspectives on biobank consent models. Genet Med. 2011; 13(9): 821-831
37. Carlfjord S, Lindberg M, Bendtsen P, Nilsen P, Andersson A. Key factors influencing adoption of an innovation in primary health care: A qualitative study based on implementation theory. BMC Fam Pract. 2010; 11(1): 60
38. Rogers EM. Diffusion of Innovations. 5th ed. New York, NY: Free Press; 2003
39. Nagaraj CB, Rothwell E, Hart K, Latimer S, Schiffman JD, Botkin JR. Attitudes of parents of children with serious health conditions regarding residual bloodspot use. Public Health Genomics. 2014; 17(3): 141-148
40. Feuchtbaum L, Cunningham G, Sciortino S. Questioning the need for informed consent: A case study of California's experience with a pilot newborn screening research project. J Empir Res Hum Res Ethics. 2007; 2(3): 3-14
41. Kaufman D, Murphy J, Scott J, Hudson K. Subjects matter: A survey of public opinions about a large genetic cohort study. Genet Med. 2008; 10(11): 831-839
42. Vernooij-van Langen AM, Reijntjens S, van der Pal SM, Loeber JG, Dompeling E, Dankert-Roelse JE. To know or not to know, disclosure of a newborn carrier screening test result for cystic fibrosis. Eur J Med Genet. 2013; 56(4): 192-196
43. Parker LS. Returning individual research results: What role should people's preferences play? Minn J Law Sci Technol. 2012; 13(2): 449-484
44. McCullough LB, Brothers KB, Chung WK, et al; Clinical Sequencing Exploratory Research (CSER) Consortium Pediatrics Working Group. Professionally responsible disclosure of genomic sequencing results in pediatric practice. Pediatrics. 2015; 136(4). Available at: Www. pediatrics. org/cgi/content/full/136/4/e974