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Volumn 36, Issue 10, 2011, Pages 1113-1121

Commentary: Children and predictive genomic testing: Disease prevention, research protection, and our future

Author keywords

children; genetic testing; psychosocial risks benefits; research ethics

Indexed keywords

ARTICLE; CHILD; CHILD WELFARE; GENETIC SCREENING; HUMAN; RESEARCH ETHICS; RISK ASSESSMENT;

EID: 80455145013     PISSN: 01468693     EISSN: 1465735X     Source Type: Journal    
DOI: 10.1093/jpepsy/jsr040     Document Type: Review
Times cited : (17)

References (59)
  • 1
    • 80455138381 scopus 로고    scopus 로고
    • 23 and Me, Retrieved October 11, 2010 from
    • 23 and Me. (2010). Privacy statement. Retrieved October 11, 2010 from https://www.23andme.com/about/privacy/#Full.
    • (2010) Privacy Statement
  • 2
    • 0028959392 scopus 로고
    • Informed consent, parental permission, and assent in pediatric practice
    • American Academy of Pediatrics Committee on Bioethics
    • American Academy of Pediatrics Committee on Bioethics. (1995). Informed consent, parental permission, and assent in pediatric practice. Pediatrics, 95, 314-317.
    • (1995) Pediatrics , vol.95 , pp. 314-317
  • 3
    • 0028872836 scopus 로고
    • Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents
    • American Society of Human Genetics Board of Directors & American College of Medical Genetics Board of Directors
    • American Society of Human Genetics Board of Directors & American College of Medical Genetics Board of Directors. (1995). Points to consider: Ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 57, 1233-1241.
    • (1995) American Journal of Human Genetics , vol.57 , pp. 1233-1241
  • 4
    • 0038744296 scopus 로고    scopus 로고
    • Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: A combined analysis of 22 studies
    • Antoniou, A., Pharoah, P. D., Narod, S., Risch, H. A., Eyfjord, J. E., & Hopper, J. L. (2003). Average risks of breast and ovarian cancer associated with BRCA1 or BRCA2 mutations detected in case Series unselected for family history: A combined analysis of 22 studies. American Journal of Human Genetics, 72, 1117-1130.
    • (2003) American Journal of Human Genetics , vol.72 , pp. 1117-1130
    • Antoniou, A.1    Pharoah, P.D.2    Narod, S.3    Risch, H.A.4    Eyfjord, J.E.5    Hopper, J.L.6
  • 5
    • 69049114189 scopus 로고    scopus 로고
    • Pharmacogenomics of adverse drug reactions: Practical applications and perspectives
    • Becquemont, L. (2009). Pharmacogenomics of adverse drug reactions: Practical applications and perspectives. Pharmacogenomics, 10, 961-969.
    • (2009) Pharmacogenomics , vol.10 , pp. 961-969
    • Becquemont, L.1
  • 6
    • 79851493086 scopus 로고    scopus 로고
    • Effect of direct-to-consumer genomewide profiling to assess disease risk
    • Bloss, C. S., Schork, N. J., & Topol, E. J. (2011). Effect of direct-to-consumer genomewide profiling to assess disease risk. The New England Journal of Medicine, 364, 524-534.
    • (2011) The New England Journal of Medicine , vol.364 , pp. 524-534
    • Bloss, C.S.1    Schork, N.J.2    Topol, E.J.3
  • 9
    • 78349293501 scopus 로고    scopus 로고
    • FDA to regulate direct-to-consumer genetic tests
    • 1617
    • Brower, V. (2010). FDA to regulate direct-to-consumer genetic tests. Journal of the National Cancer Institute, 102, 1610-1612, 1617.
    • (2010) Journal of the National Cancer Institute , vol.102 , pp. 1610-1612
    • Brower, V.1
  • 10
    • 33745738700 scopus 로고    scopus 로고
    • Ethical issues arising from the participation of children in genetic research
    • Burke, W., & Diekema, D. S. (2006). Ethical issues arising from the participation of children in genetic research. The Journal of Pediatrics, 149, S34-S38.
    • (2006) The Journal of Pediatrics , vol.149
    • Burke, W.1    Diekema, D.S.2
  • 11
    • 0027945216 scopus 로고
    • The genetic testing of children. Working Party of the Clinical Genetics Society (UK)
    • Clarke, A. (1994). The genetic testing of children. Working Party of the Clinical Genetics Society (UK). Journal of Medical Genetics, 31, 785-797.
    • (1994) Journal of Medical Genetics , vol.31 , pp. 785-797
    • Clarke, A.1
  • 12
    • 0034737962 scopus 로고    scopus 로고
    • What makes clinical research ethical?
    • Emanuel, E. J., Wendler, D., & Grady, C. (2000). What makes clinical research ethical? JAMA, 283, 2701-2711.
    • (2000) JAMA , vol.283 , pp. 2701-2711
    • Emanuel, E.J.1    Wendler, D.2    Grady, C.3
  • 13
    • 0030823158 scopus 로고    scopus 로고
    • Effects of age, sex, and ethnicity on the association between apolipoprotein E genotype and Alzheimer disease: A meta-analysis. APOE and Alzheimer Disease Meta Analysis Consortium
    • Farrer, L. A., Cupples, L. A., Haines, J. L., Hyman, B., Kukull, W. A., Mayeux, R.,... van Duijn, C. M. (1997). Effects of age, sex, and ethnicity on the association between apolipoprotein E genotype and Alzheimer disease: A meta-analysis. APOE and Alzheimer Disease Meta Analysis Consortium. JAMA, 278, 1349-1356.
    • (1997) JAMA , vol.278 , pp. 1349-1356
    • Farrer, L.A.1    Cupples, L.A.2    Haines, J.L.3    Hyman, B.4    Kukull, W.A.5    Mayeux, R.6    Van Duijn, C.M.7
  • 15
    • 17344365851 scopus 로고    scopus 로고
    • Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium
    • the Breast Cancer Linkage Consortium
    • Ford, D., Easton, D. F., Stratton, M., Narod, S., Goldgar, D., Devilee, P.,... Zelada-Hedman, M. the Breast Cancer Linkage Consortium (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. The Breast Cancer Linkage Consortium. American Journal of Human Genetics, 62, 676-689.
    • (1998) American Journal of Human Genetics , vol.62 , pp. 676-689
    • Ford, D.1    Easton, D.F.2    Stratton, M.3    Narod, S.4    Goldgar, D.5    Devilee, P....6    Zelada-Hedman, M.7
  • 16
    • 2942631402 scopus 로고    scopus 로고
    • Natural settings trials-improving the introduction of clinical genetic tests
    • Freund, C. L., Clayton, E. W., & Wilfond, B. S. (2004). Natural settings trials-improving the introduction of clinical genetic tests. The Journal of Law, Medicine & Ethics, 32, 106-110.
    • (2004) The Journal of Law, Medicine & Ethics , vol.32 , pp. 106-110
    • Freund, C.L.1    Clayton, E.W.2    Wilfond, B.S.3
  • 17
    • 0042525886 scopus 로고    scopus 로고
    • Direct-to-consumer sales of genetic services on the Internet
    • Gollust, S. E., Wilfond, B. S., & Hull, S. C. (2003). Direct-to-consumer sales of genetic services on the Internet. Genetics in Medicine, 5, 332-337.
    • (2003) Genetics in Medicine , vol.5 , pp. 332-337
    • Gollust, S.E.1    Wilfond, B.S.2    Hull, S.C.3
  • 18
    • 78049402767 scopus 로고    scopus 로고
    • Direct-to-consumer genetic tests: Misleading test results are further complicated by deceptive marketing and other questionable practices
    • Government Accountability Office, Washington, DC: Retrieved September 24, 2010 from
    • Government Accountability Office. (2010). Direct-to-Consumer Genetic Tests: Misleading Test Results Are Further Complicated by Deceptive Marketing and Other Questionable Practices. GAO-10-847T, a testimony before the Subcommittee on Oversight and Investigations, Committee on Energy and Commerce, House of Representatives. Washington, DC: Retrieved September 24, 2010 from http://www.gao.gov/new.items/d10847t.pdf.
    • (2010) GAO-10-847T, A Testimony Before the Subcommittee on Oversight and Investigations, Committee on Energy and Commerce, House of Representatives
  • 20
    • 80455147835 scopus 로고    scopus 로고
    • Guidelines for genetic testing of healthy children
    • Guidelines for genetic testing of healthy children. (2003). Paediatrics & Child Health 8, 42-52.
    • (2003) Paediatrics & Child Health , vol.8 , pp. 42-52
  • 21
    • 68949124840 scopus 로고    scopus 로고
    • Ensuring the safe use of genomic medicine in children
    • Haga, S. B., & Terry, S. F. (2009). Ensuring the safe use of genomic medicine in children. Clinical Pediatrics, 48, 703-708.
    • (2009) Clinical Pediatrics , vol.48 , pp. 703-708
    • Haga, S.B.1    Terry, S.F.2
  • 24
    • 38449088688 scopus 로고    scopus 로고
    • ASHG Statement on direct-to-consumer genetic testing in the United States
    • American Society of Human Genetics Social Issues Committee
    • Hudson, K., Javitt, G., Burke, W., & Byers, P. American Society of Human Genetics Social Issues Committee (2007). ASHG Statement on direct-to-consumer genetic testing in the United States. Obstetrics and Gynecology, 110, 1392-1395.
    • (2007) Obstetrics and Gynecology , vol.110 , pp. 1392-1395
    • Hudson, K.1    Javitt, G.2    Burke, W.3    Byers, P.4
  • 26
    • 69549126536 scopus 로고    scopus 로고
    • The scientific foundation for personal genomics: Recommendations from a National Institutes of Health-Centers for Disease Control and Prevention multidisciplinary workshop
    • Centers for Disease Control and Prevention
    • Khoury, M. J., McBride, C. M., Schully, S. D., Ioannidis, J. P., Feero, W. G., Janssens, A. C.,... Xu, J. Centers for Disease Control and Prevention (2009). The Scientific Foundation for personal genomics: Recommendations from a National Institutes of Health-Centers for Disease Control and Prevention multidisciplinary workshop. Genetics in Medicine, 11, 559-567.
    • (2009) Genetics in Medicine , vol.11 , pp. 559-567
    • Khoury, M.J.1    McBride, C.M.2    Schully, S.D.3    Ioannidis, J.P.4    Feero, W.G.5    Janssens, A.C....6    Xu, J.7
  • 28
    • 0142178215 scopus 로고    scopus 로고
    • Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2
    • New York Breast Cancer Study Group
    • King, M. C., Marks, J. H., & Mandell, J. B. New York Breast Cancer Study Group (2003). Breast and ovarian cancer risks due to inherited mutations in BRCA1 and BRCA2. Science, 302, 643-646.
    • (2003) Science , vol.302 , pp. 643-646
    • King, M.C.1    Marks, J.H.2    Mandell, J.B.3
  • 29
    • 77955653161 scopus 로고    scopus 로고
    • Expectations, validity, and reality in pharmacogenetics
    • Limdi, N. A., & Veenstra, D. L. (2010). Expectations, validity, and reality in pharmacogenetics. Journal of Clinical Epidemiology, 63, 960-969.
    • (2010) Journal of Clinical Epidemiology , vol.63 , pp. 960-969
    • Limdi, N.A.1    Veenstra, D.L.2
  • 30
    • 47749116951 scopus 로고    scopus 로고
    • Predictive genetic testing of children for adult-onset diseases and psychological harm
    • Malpas, P. J. (2008). Predictive genetic testing of children for adult-onset diseases and psychological harm. Journal of Medical Ethics, 34, 275-278.
    • (2008) Journal of Medical Ethics , vol.34 , pp. 275-278
    • Malpas, P.J.1
  • 32
    • 77449111996 scopus 로고    scopus 로고
    • Commentary: Trailblazing a research agenda at the interface of pediatrics and genomic discovery-A commentary on the psychological aspects of genomics and child health
    • McBride, C. M., & Guttmacher, A. E. (2009). Commentary: Trailblazing a research agenda at the interface of pediatrics and genomic discovery-a commentary on the psychological aspects of genomics and child health. Journal of Pediatric Psychology, 34, 662-664.
    • (2009) Journal of Pediatric Psychology , vol.34 , pp. 662-664
    • McBride, C.M.1    Guttmacher, A.E.2
  • 35
    • 21344458142 scopus 로고    scopus 로고
    • From genetics to genomics: Using gene-based medicine to prevent disease and promote health in children
    • Moore, C. A., Khoury, M. J., & Bradley, L. A. (2005). From genetics to genomics: Using gene-based medicine to prevent disease and promote health in children. Seminars in Perinatology, 29, 135-143.
    • (2005) Seminars in Perinatology , vol.29 , pp. 135-143
    • Moore, C.A.1    Khoury, M.J.2    Bradley, L.A.3
  • 37
    • 70349943777 scopus 로고    scopus 로고
    • An agenda for personalized medicine
    • Ng, P. C., Murray, S. S., Levy, S., & Venter, J. C. (2009). An agenda for personalized medicine. Nature, 461, 724-726.
    • (2009) Nature , vol.461 , pp. 724-726
    • Ng, P.C.1    Murray, S.S.2    Levy, S.3    Venter, J.C.4
  • 38
    • 66949136873 scopus 로고    scopus 로고
    • Office of Biotechnology Activities & National Institutes of Health, Report of the Secretary's Advisory Committee on Genetics, Health, and Society. Retrieved May 6, 2011 from
    • Office of Biotechnology Activities & National Institutes of Health. (2007). Policy issues associated with undertaking a new large U. S. population cohort study of genes, environment, and disease. Report of the Secretary's Advisory Committee on Genetics, Health, and Society. Retrieved May 6, 2011 from http://oba.od. nih.gov/oba/sacghs/reports/SACGHS-LPS-report.pdf; Page 34.
    • (2007) Policy Issues Associated with Undertaking A New Large U. S. Population Cohort Study of Genes, Environment, and Disease , pp. 34
  • 40
    • 0037372465 scopus 로고    scopus 로고
    • Pediatric psychology training and genetics: What will twenty-first-century pediatric psychologists need to know?
    • Patenaude, A. F. (2003). Pediatric psychology training and genetics: What will twenty-first-century pediatric psychologists need to know? Journal of Pediatric Psychology, 28, 135-145.
    • (2003) Journal of Pediatric Psychology , vol.28 , pp. 135-145
    • Patenaude, A.F.1
  • 41
    • 77249093312 scopus 로고    scopus 로고
    • Brief assessment of parents' attitudes toward testing minor children for hereditary breast/ovarian cancer genes: Development and validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS)
    • Peshkin, B. N., DeMarco, T. A., Garber, J. E., Valdimarsdottir, H. B., Patenaude, A. F., Schneider, K. A.,... Tercyak, K. P. (2009). Brief assessment of parents' attitudes toward testing minor children for hereditary breast/ovarian cancer genes: Development and validation of the Pediatric BRCA1/2 Testing Attitudes Scale (P-TAS). Journal of Pediatric Psychology, 34, 627-638.
    • (2009) Journal of Pediatric Psychology , vol.34 , pp. 627-638
    • Peshkin, B.N.1    DeMarco, T.A.2    Garber, J.E.3    Valdimarsdottir, H.B.4    Patenaude, A.F.5    Schneider, K.A....6    Tercyak, K.P.7
  • 45
    • 0033290042 scopus 로고    scopus 로고
    • Implications of genetic epidemiology for the prevention of tobacco use
    • Swan, G. E. (1999). Implications of genetic epidemiology for the prevention of tobacco use. Nicotine & Tobacco Research, 1(Suppl 1), S49-S56.
    • (1999) Nicotine & Tobacco Research , vol.1 , Issue.1 SUPPL.
    • Swan, G.E.1
  • 46
    • 70449726790 scopus 로고    scopus 로고
    • Challenges in the use of direct-to-consumer personal genome testing in children
    • Tabor, H. K., & Kelley, M. (2009). Challenges in the use of direct-to-consumer personal genome testing in children. The American Journal of Bioethics, 9, 32-34.
    • (2009) The American Journal of Bioethics , vol.9 , pp. 32-34
    • Tabor, H.K.1    Kelley, M.2
  • 48
    • 80455136423 scopus 로고    scopus 로고
    • Genetics and genetic testing
    • R. G. Steele, & M. C. Roberts Eds., 4th ed., New York: Guilford
    • Tercyak, K. P. (2009a). Genetics and genetic testing. In R. G. Steele, & M. C. Roberts (Eds.), Handbook of Pediatric Psychology (4th ed., pp. 721-736) New York: Guilford.
    • (2009) Handbook of Pediatric Psychology , pp. 721-736
    • Tercyak, K.P.1
  • 49
    • 77449151274 scopus 로고    scopus 로고
    • Introduction to the special issue: Psychological aspects of genomics and child health
    • Tercyak, K. P. (2009b). Introduction to the special issue: Psychological aspects of genomics and child health. Journal of Pediatric Psychology, 34, 589-595.
    • (2009) Journal of Pediatric Psychology , vol.34 , pp. 589-595
    • Tercyak, K.P.1
  • 52
    • 33748309284 scopus 로고    scopus 로고
    • Opportunities and challenges in the prevention and control of cancer and other chronic diseases: Children's diet and nutrition and weight and physical activity
    • Tercyak, K. P., & Tyc, V. L. (2006). Opportunities and challenges in the prevention and control of cancer and other chronic diseases: Children's diet and nutrition and weight and physical activity. Journal of Pediatric Psychology, 31, 750-763.
    • (2006) Journal of Pediatric Psychology , vol.31 , pp. 750-763
    • Tercyak, K.P.1    Tyc, V.L.2
  • 53
    • 80455136424 scopus 로고    scopus 로고
    • Code of federal regulations
    • U. S. Department of Health and Human Services, Additional Protections for Children Involved as Subjects in Research. Retrieved May 6, 2011 from
    • U. S. Department of Health and Human Services. (2009). Code of Federal Regulations. Human Subjects Research (45 CFR 46.405 and 46.406). Additional Protections for Children Involved as Subjects in Research. Retrieved May 6, 2011 from http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.html.
    • (2009) Human Subjects Research (45 CFR 46.405 and 46.406)
  • 54
    • 34547759376 scopus 로고    scopus 로고
    • U. S. Department of Health and Human Services, Retrieved September 24, 2010 from
    • U. S. Department of Health and Human Services. (2010). Surgeon General's Family Health History Initiative. Retrieved September 24, 2010 from http://www.hhs.gov/familyhistory/.
    • (2010) Surgeon General's Family Health History Initiative
  • 55
    • 80455138377 scopus 로고    scopus 로고
    • U. S. Food and Drug Administration, Retrieved September 13, 2010 from
    • U. S. Food and Drug Administration. (2010). Medical Devices: In Vitro Diagnostics. Retrieved September 13, 2010 from http://www.fda.gov/ MedicalDevices/ProductsandMedicalProcedures/InVitroDiagnostics/default.htm.
    • (2010) Medical Devices: In Vitro Diagnostics
  • 56
    • 35048876116 scopus 로고    scopus 로고
    • Psychosocial and behavioral impact of genetic counseling and testing
    • Vadaparampil, S. T., Miree, C. A., Wilson, C., & Jacobsen, P. B. (2006). Psychosocial and behavioral impact of genetic counseling and testing. Breast Disease, 27, 97-108.
    • (2006) Breast Disease , vol.27 , pp. 97-108
    • Vadaparampil, S.T.1    Miree, C.A.2    Wilson, C.3    Jacobsen, P.B.4
  • 57
    • 77953960881 scopus 로고    scopus 로고
    • Effects of genetic risk information on children's psychosocial wellbeing: A systematic review of the literature
    • Wade, C. H., Wilfond, B. S., & McBride, C. M. (2010). Effects of genetic risk information on children's psychosocial wellbeing: A systematic review of the literature. Genetics in Medicine, 12, 317-326.
    • (2010) Genetics in Medicine , vol.12 , pp. 317-326
    • Wade, C.H.1    Wilfond, B.S.2    McBride, C.M.3
  • 58
    • 77249151732 scopus 로고    scopus 로고
    • From genetics to genomics: Ethics, policy, and parental decision-making
    • Wilfond, B., & Ross, L. F. (2009). From genetics to genomics: Ethics, policy, and parental decision-making. Journal of Pediatric Psychology, 34, 639-647.
    • (2009) Journal of Pediatric Psychology , vol.34 , pp. 639-647
    • Wilfond, B.1    Ross, L.F.2
  • 59
    • 2442670667 scopus 로고    scopus 로고
    • Ethical issues in conducting behavioral genetics research: The case of smoking prevention trials among adolescents
    • Wilfond, B. S., Geller, G., Lerman, C., Audrain-McGovern, J., & Shields, A. E. (2002). Ethical issues in conducting behavioral genetics research: The case of smoking prevention trials among adolescents. Journal of Health Care Law & Policy, 6, 73-88.
    • (2002) Journal of Health Care Law & Policy , vol.6 , pp. 73-88
    • Wilfond, B.S.1    Geller, G.2    Lerman, C.3    Audrain-McGovern, J.4    Shields, A.E.5


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