Adolescents’ preferences regarding disclosure of incidental findings in genomic sequencing that are not medically actionable in childhood

American Journal of Medical Genetics, Part A

Volumn 170, Issue 8, 2016, Pages 2083-2088

  Hufnagel, Sophia B ^a,b,c   Martin, Lisa J ^a,b   Cassedy, Amy ^a,b   Hopkin, Robert J ^a,b   Antommaria, Armand H Matheny ^a,b  

^a CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

^b UNIVERSITY OF CINCINNATI COLLEGE OF MEDICINE   (United States)

^c CHILDREN'S NATIONAL MEDICAL CENTER   (United States)

Author keywords

adolescent; attitudes; genetic testing; health knowledge; incidental findings; practice

Indexed keywords

ACCESS TO INFORMATION; ADOLESCENT; ADULT; ARTICLE; CHILD; CROSS-SECTIONAL STUDY; FAMILY STRESS; FEMALE; GENE SEQUENCE; GENETIC SCREENING; HUMAN; INCIDENTAL FINDING; INTERPERSONAL COMMUNICATION; MALE; OHIO; PARENT; PATIENT DECISION MAKING; PATIENT PREFERENCE; PRIORITY JOURNAL; SCHOOL CHILD; STUDENT ATTITUDE; YOUNG ADULT; DECISION MAKING; EPIDEMIOLOGY; GENOMICS; HIGH THROUGHPUT SEQUENCING; HUMAN GENOME; NUCLEOTIDE SEQUENCE; STUDENT;

ADOLESCENT; BASE SEQUENCE; CHILD; CROSS-SECTIONAL STUDIES; DECISION MAKING; DISCLOSURE; FEMALE; GENETIC TESTING; GENOME, HUMAN; GENOMICS; HIGH-THROUGHPUT NUCLEOTIDE SEQUENCING; HUMANS; INCIDENTAL FINDINGS; MALE; OHIO; PATIENT PREFERENCE; STUDENTS; YOUNG ADULT;

EID: 84965002840     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.37730     Document Type: Article

References (22)

1. ACMG Board of Directors. 2015. ACMG policy statement: Updated recommendations regarding analysis and reporting of secondary findings in clinical genome-scale sequencing. Genet Med 17:68–69.
2. Broadstock M, Michie S, Marteau T. 2000. Psychological consequences of predictive genetic testing: A systematic review. Eur J Hum Genet 8:731–738.
3. Burke W, Antommaria AH, Bennett R, Botkin J, Clayton EW, Henderson GE, Holm IA, Jarvick GP, Khoury MJ, Knoppers BM, Press NA, Ross LF, Rothstein MA, Saal H, Uhlmann WR, Wifond B, Wolf SM, Zimmern R. 2013. Recommendations for returning genomic incidental findings? We need to talk! Genet Med 15:854–859.
4. Duncan RE, Delatycki MB. 2006. Predictive genetic testing in young people for adult-onset conditions: Where is the empirical evidence? Clin Genet 69:17–20.
5. Duncan RE, Gillam L, Savulescu J, Williamson R, Rogers JG, Delatycki MB. 2008. “ You're one of us now”: Young people describe their experiences of predictive genetic testing for Huntington disease (HD) and familial adenomatous polyposis (FAP). Am J Med Genet Part C Semin Med Genet 148C:47–55.
6. Fernandez CV, Bouffet E, Malkin D, Jabado N, O'Connell C, Avard D, Knoppers BM, Ferguson M, Boycott KM, Sorensen PH, Orr AC, Robitaille JM, McMaster CR. 2014. Attitudes of parents toward the return of targeted and incidental genomic research findings in children. Genet Med 16:633–640.
7. Garrison NA, Sathe NA, Antommaria AH, Holm IA, Sanderson SC, Smith ME, McPheeters ML, Clayton EW. 2015. A systematic literature review of individuals’ perspectives on broad consent and data sharing in the United States. Genet Med. doi: 10.1038/gim.2015.138
8. Green RC, Berg JS, Grody WW, Kalia SS, Korf BR, Martin CL, McGuire AL, Nussbaum RL, O'Daniel JM, Ormond KE, Rehm HL, Watson MS, Williams MS, Biesecker LG; American College of Medical Genetics and Genomics. 2013. ACMG recommendations for reporting of inccidental findings in clinical exome and genome sequencing. Genet Med 15:439–441.
9. Hens K, Nys H, Cassiman JJ, Dierickx K. 2009. Genetic research on stored tissue samples from minors: A systematic review of the ethical literature. Am J Med Genet Part A 149A:2346–2358.
10. Hufnagel SB, Antommaria AH. 2014. Laboratory policies on reporting secondary findings in clinical whole exome sequencing: Initial uptake of the ACMG's recommendations. Am J Med Genet Part A 164A:1231–1328.
11. International Huntington Association and the World Federation of Neurology Research Group on Huntington's Chorea. 1990. Ethical issues policy statement on Huntington's disease molecular genetics predictive test. J Med Genet 27:34–38.
12. Kleiderman E, Knoppers BM, Fernandez CV, Boycott KM, Ouellette G, Wong-Rieger D, Adam S, Richer J, Avard D. 2014. Returning incidental findings from genetic research to children: Views of parents of children affected by rare diseases. J Med Ethics 40:691–696.
13. Malpas PJ. 2006. Why tell asymptomatic children of the risk of an adult-onset disease in the family but not test them for it? J Med Ethics 32:639–642.
14. Malpas PJ. 2008. Predictive genetic testing of children for adult-onset diseases and psychological harm. J Med Ethics 34:275–278.
15. Mand C, Gillam L, Delatycki MB, Duncan RE. 2012. Predictive genetic testing in minors for late-onset conditions: A chronological and analytical review of the ethical arguments. J Med Ethics 38:519–524.
16. National Institutes of Health. 2013. NIH program explores the use of genomic sequencing in newborn healthcare. http://www.nih.gov/news-events/news-releases/nih-program-explores-use-genomic-sequencing-newborn-healthcare
17. Ross LF, Saal HM, David KL, Anderson RR. 2013. Technical report: Ethical and policy issues in genetic testing and screening of children. Genet Med 15:234–245.
18. Scoring the School Districts. 2012. http://enquirer.com/schools/highlights.html
19. Silber TJ. 2011. Adolescent brain development and the mature minor doctrine. Adolesc Med State Art Rev 22:207–212.
20. Wade CH, Wilfond BS, McBride CM. 2010. Effects of genetic risk information on children's psychosocial wellbeing: A systematic review of the literature. Genet Med 12:317–326.
21. Wiggins S, Whyte P, Huggins M, Adam S, Theilmann J, Bloch M, Sheps SB, Schechter MT, Hayden MR. 1992. The psychological consequences of predictive testing for Huntington's disease. Canadian Collaborative Study of Predictive Testing. New Engl J Med 327:1401–1405.
22. Wolf SM, Annas GJ, Elias S. 2013. Point-counterpoint. Patient autonomy and incidental findings in clinical genomics. Science 340:1049–1050.