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Ethical, Legal and Social Issues in the Genetic Testing of Minors

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Handbook of Genomics and the Family

Part of the book series: Issues in Clinical Child Psychology ((ICCP))

Abstract

Since the availability of testing for hereditary diseases, genetic testing of minors has stirred controversy as regards the ethical implications of the tests. The fear that genetic testing of children could have adverse social, emotional. psychosocial and educational consequences in childhood or later life has motivated a cautious approach. In summary, guidelines agree that genetic testing of children is appropriate in two situations. The first is the testing of a symptomatic child if the tests are likely to help establish a diagnosis and/or a prognosis and to avoid further invasive diagnostic tests. The second is predictive genetic testing in healthy children where onset of the condition regularly occurs in childhood and useful medical interventions can be offered.

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Notes

  1. 1.

    The guidelines that have been published so far do not contain a category of “adult-onset disease where childhood intervention could be useful”. For example, some people think that participating in sports in childhood might be protective against breast cancer later on. This type of category could be justified once the medical evidence is sufficiently clear.

  2. 2.

    Carrier testing in this text will be used to refer predominantly to testing of heterozygous individuals who carry a recessive gene or a balanced chromosomal rearrangement where carriers themselves are not affected but could transmit the mutation to their children and have affected offspring under certain conditions (for example if both parents are carriers of the recessive gene).

REFERENCES

  • American College of Medical Genetics and the Newborn Screening Expert Group (2004). Newborn screening: Towards a uniform screening panel and system. Retrieved April, 2008, from http://mchb.hrsa.gov/screening/

  • American Medical Association (1995). Testing children for genetic status. Retrieved April, 2008, from http://www.ama-assn.org/ama1/pub/upload/mm/369/ceja_4a95.pdf

  • American Medical Association (1996). Genetic testing of children. Retrieved April, 2010, from http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion2138.shtml

  • American Society of Clinical Oncology (1996). Statement of the American Society of Clinical Oncology: Genetic testing for cancer susceptibility, Adopted on February 20, 1996. Journal of Clinical Oncology, 14(5), 1730–1736, discussion 1737–1740.

    Google Scholar 

  • American Society of Human Genetics/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(5), 1233–1241.

    Google Scholar 

  • Ardaillou, R., & Le Gall, J. Y. (2007). Mass neonatal screening using biological testing. Gynecologie, Obstetrique and Fertilite, 35(4), 367–374.

    Google Scholar 

  • Arribas-Ayllon, M., Sarangi, S., & Clarke, A. (2008). The micropolitics of responsibility vis-a-vis autonomy: Parental accounts of childhood genetic testing and (non)disclosure. Sociology of Health and Illness, 30(2), 255–271.

    PubMed  Google Scholar 

  • Bailey, D. B., Jr., Skinner, D., Davis, A. M., Whitmarsh, I., & Powell, C. (2008). Ethical, legal, and social concerns about expanded newborn screening: Fragile X syndrome as a prototype for emerging issues. Pediatrics, 121(3), e693–e704.

    PubMed  Google Scholar 

  • Bailey, D. B., Jr., Skinner, D., & Sparkman, K. L. (2003). Discovering fragile X syndrome: Family experiences and perceptions. Pediatrics, 111(2), 407–416.

    PubMed  Google Scholar 

  • Balfour-Lynn, I. M. (2008). Newborn screening for cystic fibrosis: Evidence for benefit. Archive of Disease in Childhood, 93(1), 7–10.

    Google Scholar 

  • Beck, E., Blaichman, S., Scriver, C. R., & Clow, C. L. (1974). Advocacy and compliance in genetic screening. Behavior of physicians and clients in a voluntary program of testing for the Tay-Sachs gene. New England Journal of Medicine, 291(22), 1166–1170.

    PubMed  Google Scholar 

  • Berg, J. S., French, S. L., McCullough, L. B., Kleppe, S., Sutton, V. R., Gunn, S. K., et al. (2007). Ethical and legal implications of genetic testing in androgen insensitivity syndrome. Journal of Pediatrics, 150(4), 434–438.

    PubMed  Google Scholar 

  • Bioethics Committee Canadian Paediatric Society (2003). Guidelines for genetic testing of healthy children. Paediatrics and Child Health, 8, 42–45.

    Google Scholar 

  • Boddington, P., & Hogben, S. (2006). Working up policy: The use of specific disease exemplars in formulating general principles governing childhood genetic testing. Health Care Analysis, 14(1), 1–13.

    PubMed  Google Scholar 

  • Borchelt, R. (2008). Genetic Information Nondiscrimination Act clears Senate. Retrieved April, 2008, from http://www.eurekalert.org/pub_releases/2008-04/gpp-gin042508.php

  • Borry, P., Fryns, J. P., Schotsmans, P., & Dierickx, K. (2006). Carrier testing in minors: A systematic review of guidelines and position papers. European Journal of Human Genetics, 14(2), 133–138.

    PubMed  Google Scholar 

  • Borry, P., Goffin, T., Nys, H., & Dierickx, K. (2007). Attitudes regarding carrier testing in incompetent children: A survey of European clinical geneticists. European Journal of Human Genetics, 15(12), 1211–1217.

    PubMed  Google Scholar 

  • Borry, P., Goffin, T., Nys, H., & Dierickx, K. (2008). Attitudes regarding predictive genetic testing in minors: A survey of European clinical geneticists. American Journal of Medical Genetics Part C, Seminars in Medical Genetics, 148(1), 78–83.

    Google Scholar 

  • Borry, P., Nys, H., & Dierickx, K. (2007). Carrier testing in minors: Conflicting views. Nature Reviews Genetics, 8(11), 828.

    PubMed  Google Scholar 

  • Borry, P., Stultiens, L., Nys, H., Cassiman, J. J., & Dierickx, K. (2006). Presymptomatic and predictive genetic testing in minors: A systematic review of guidelines and position papers. Clinical Genetics, 70(5), 374–381.

    PubMed  Google Scholar 

  • Bradbury, A. R., Patrick-Miller, L., Pawlowski, K., Ibe, C. N., Cummings, S. A., Olopade, O. I., et al. (2008). Should genetic testing for BRCA1/2 be permitted for minors? Opinions of BRCA mutation carriers and their adult offspring. American Journal of Medical Genetics Part C, Seminars in Medical Genetics, 148(1), 70–77.

    Google Scholar 

  • Brett, A. S., & McCullough, L. B. (1986). When patients request specific interventions: Defining the limits of the physician’s obligation. New England Journal of Medicine, 315(21), 1347–1351.

    PubMed  Google Scholar 

  • British Medical Association (1998). Human genetics: Choice and responsibility. Oxford: Oxford University Press.

    Google Scholar 

  • Broadstock, M., Michie, S., Gray, J., Mackay, J., & Marteau, T. M. (2000). The psychological consequences of offering mutation searching in the family for those at risk of hereditary breast and ovarian cancer—a pilot study. Psychooncology, 9(6), 537–548.

    PubMed  Google Scholar 

  • Broadstock, M., Michie, S., & Marteau, T. (2000). Psychological consequences of predictive genetic testing: A systematic review. European Journal of Human Genetics, 8(10), 731–738.

    PubMed  Google Scholar 

  • Broide, E., Zeigler, M., Eckstein, J., & Bach, G. (1993). Screening for carriers of Tay-Sachs disease in the ultraorthodox Ashkenazi Jewish community in Israel. American Journal of Medical Genetics, 47(2), 213–215.

    PubMed  Google Scholar 

  • Burke, T., & Rosenbaum, S. (2005). Molloy v Meier and the expanding standard of medical care: Implications for public health policy and practice. Public Health Reports, 120(2), 209–210.

    PubMed  Google Scholar 

  • Cassileth, B. R., Zupkis, R. V., Sutton-Smith, K., & March, V. (1980). Information and participation preferences among cancer patients. Annals of Intern Medicine, 92(6), 832–836.

    Google Scholar 

  • Charron, P., Heron, D., Gargiulo, M., Richard, P., Dubourg, O., Desnos, M., et al. (2002). Genetic testing and genetic counselling in hypertrophic cardiomyopathy: The French experience. Journal of Medical Genetics, 39(10), 741–746.

    PubMed  Google Scholar 

  • Claes, E., Evers-Kiebooms, G., Denayer, L., Decruyenaere, M., Boogaerts, A., Philippe, K., et al. (2005). Predictive genetic testing for hereditary breast and ovarian cancer: Psychological distress and illness representations 1 year following disclosure. Journal of Genetic Counseling, 14(5), 349–363.

    PubMed  Google Scholar 

  • Clarke, A. (1994). The genetic testing of children. Working Party of the Clinical Genetics Society (UK). Journal of Medical Genetics, 31(10), 785–797.

    PubMed  Google Scholar 

  • Clarke, A., & Flinter, F. (1996). The genetic testing of children: A clinical perspective. In T. Marteau & M. Richards (Eds.), The troubled helix: Social and psychological implications of the new human genetics (pp. 164–176). Cambridge: Cambridge University Press.

    Google Scholar 

  • Clayton, E. W. (1995). Removing the shadow of the law from the debate about genetic testing of children. American Journal of Medical Genetics, 57(4), 630–634.

    PubMed  Google Scholar 

  • Clayton, E. W. (1999). What should be the role of public health in newborn screening and prenatal diagnosis? American Journal of Preventive Medicine, 16(2), 111–115.

    PubMed  Google Scholar 

  • Clow, C. L., & Scriver, C. R. (1977). Knowledge about and attitudes toward genetic screening among high-school students: The Tay-Sachs experience. Pediatrics, 59(1), 86–90.

    PubMed  Google Scholar 

  • Codori, A. M., & Brandt, J. (1994). Psychological costs and benefits of predictive testing for Huntington’s disease. American Journal of Medical Genetics, 54(3), 174–184.

    PubMed  Google Scholar 

  • Codori, A. M., Zawacki, K. L., Petersen, G. M., Miglioretti, D. L., Bacon, J. A., Trimbath, J. D., et al. (2003). Genetic testing for hereditary colorectal cancer in children: Long-term psychological effects. American Journal of Medical Genetic Part A, 116(2), 117–128.

    Google Scholar 

  • Cohen, C. B. (1998). Wrestling with the future: Should we test children for adult-onset genetic conditions? Kennedy Institute of Ethics Journal, 8(2), 111–130.

    PubMed  Google Scholar 

  • Collins, F. (1996). Commentary on the ASCO statement on genetic testing for cancer susceptibility. Journal of Clinical Oncology, 14, 1738–1740.

    Google Scholar 

  • Committee on Bioethics (1995). Informed consent, parental permission, and assent in pediatric practice. American Academy of Pediatrics. Pediatrics, 95(2), 314–317.

    Google Scholar 

  • Committee on Bioethics, Nelson, R. M., Botkjin, J. R., Kodish, E. D., Levetown, M., Truman, J. T., et al. (2001). Ethical issues with genetic testing in pediatrics. Pediatrics, 107(6), 1451–1455.

    Google Scholar 

  • Conn, J., Gillam, L., & Conway, G. S. (2005). Revealing the diagnosis of androgen insensitivity syndrome in adulthood. BMJ, 331(7517), 628–630.

    PubMed  Google Scholar 

  • Dalby, S. (1995). GIG response to the UK Clinical Genetics Society report “The genetic testing of children”. Journal of Medical Genetics, 32(6), 490–491.

    PubMed  Google Scholar 

  • Davis, D. S. (1998). Discovery of children’s carrier status for recessive genetic disease: Some ethical issues. Genetic Testing, 2(4), 323–327.

    PubMed  Google Scholar 

  • De Braekeleer, M., & Melancon, M. J. (1990). The ethics of cystic fibrosis carrier screening: Where do we stand? American Journal of Human Genetics, 47(3), 580–581.

    PubMed  Google Scholar 

  • Demmer, L. A., O’Neill, M. J., Roberts, A. E., & Clay, M. C. (2000). Knowledge of ethical standards in genetic testing among medical students, residents, and practicing physicians. JAMA, 284(20), 2595–2596.

    PubMed  Google Scholar 

  • Denayer, L., Welkenhuysen, M., Evers-Kiebooms, G., Cassiman, J. J., & Van den Berghe, H. (1996). The CF carrier status is not associated with a diminished self-concept or increased anxiety: Results of psychometric testing after at least 1 year. Clinical Genetics, 49(5), 232–236.

    PubMed  Google Scholar 

  • Denayer, L., Welkenhuysen, M., Evers-Kiebooms, G., Cassiman, J. J., & Van den Berghe, H. (1997). Risk perception after CF carrier testing and impact of the test result on reproductive decision making. American Journal of Medical Genetics, 69(4), 422–428.

    PubMed  Google Scholar 

  • Drane, J. F. (1985). The many faces of competency. Hastings Center Report, 15(2), 17–21.

    PubMed  Google Scholar 

  • Duncan, R. E., & Delatycki, M. B. (2006). Predictive genetic testing in young people for adult-onset conditions: Where is the empirical evidence? Clinical Genetics, 69(1), 8–16, discussion 17–20.

    PubMed  Google Scholar 

  • Duncan, R. E., Gillam, L., Savulescu, J., Williamson, R., Rogers, J. G., & Delatycki, M. B. (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). American Journal of Medical Genetics Part C, Seminars in Medical Genetics, 148(1), 47–55.

    Google Scholar 

  • Duncan, R. E., Savulescu, J., Gillam, L., Williamson, R., & Delatycki, M. B. (2005). An international survey of predictive genetic testing in children for adult onset conditions. Genetics in Medicine, 7(6), 390–396.

    PubMed  Google Scholar 

  • Elger, B. S. (2005). Attitudes of future lawyers and psychologists to the use of genetic testing for criminal behavior. Cambridge Quarterly Healthcare Ethics, 14(3), 329–345.

    Google Scholar 

  • Elger, B. S., & Harding, T. W. (2000). Testing adolescents for a hereditary breast cancer gene (BRCA1): Respecting their autonomy is in their best interest. Archives of Pediatric and Adolescent Medicine, 154(2), 113–119.

    Google Scholar 

  • Elger, B. S., & Harding, T. (2003). Huntington’s disease: Do future physicians and lawyers think eugenically? Clinical Genetics, 64(4), 327–338.

    PubMed  Google Scholar 

  • Elger, B. S., & Harding, T. W. (2006). Should children and adolescents be tested for Huntington’s disease? Attitudes of future lawyers and physicians in Switzerland. Bioethics, 20(3), 158–167.

    PubMed  Google Scholar 

  • European Community Huntington’s Disease Collaborative Study Group (1993). Ethical and social issues in presymptomatic testing for Huntington’s disease: A European Community collaborative study. Journal of Medical Genetics, 30(12), 1028–1035.

    Google Scholar 

  • European Society of Human Genetics (2001). Provision of genetic services in Europe – Current practices and issues [Electronic Version]. Retrieved December, 2007, from http://www.eshg.org

  • Evers-Kiebooms, G., Denayer, L., Welkenhuysen, M., Cassiman, J. J., & Van den Berghe, H. (1994). A stigmatizing effect of the carrier status for cystic fibrosis? Clinical Genetics, 46(5), 336–343.

    PubMed  Google Scholar 

  • Evers-Kiebooms, G., Welkenhuysen, M., Claes, E., Decruyenaere, M., & Denayer, L. (2000). The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: Implications for multidisciplinary counselling and for genetic education. Social Science and Medicine, 51(6), 831–841.

    PubMed  Google Scholar 

  • Fant, K. E., Clark, S. J., & Kemper, A. R. (2005). Completeness and complexity of information available to parents from newborn-screening programs. Pediatrics, 115(5), 1268–1272.

    PubMed  Google Scholar 

  • Fryer, A. (1995). Genetic testing of children. Archives of Disorders in Childhood, 73(2), 97–99.

    Google Scholar 

  • Fryer, A. (2000). Inappropriate genetic testing of children. Archives of Disorders in Childhood, 83(4), 283–285.

    Google Scholar 

  • Gason, A. A., Aitken, M., Delatycki, M. B., Sheffield, E., & Metcalfe, S. A. (2004). Multimedia messages in genetics: Design, development, and evaluation of a computer-based instructional resource for secondary school students in a Tay Sachs disease carrier screening program. Genetics in Medicine, 6(4), 226–231.

    PubMed  Google Scholar 

  • Gason, A. A., Aitken, M. A., Metcalfe, S. A., Allen, K. J., & Delatycki, M. B. (2005). Genetic susceptibility screening in schools: Attitudes of the school community towards hereditary haemochromatosis. Clinical Genetics, 67(2), 166–174.

    PubMed  Google Scholar 

  • Gason, A. A., Delatycki, M. B., Metcalfe, S. A., & Aitken, M. (2006). It’s “back to school” for genetic screening. European Journal of Human Genetics, 14(4), 384–389.

    PubMed  Google Scholar 

  • Gason, A. A., Metcalfe, S. A., Delatycki, M. B., Petrou, V., Sheffield, E., Bankier, A., et al. (2005). Tay Sachs disease carrier screening in schools: Educational alternatives and cheekbrush sampling. Genetics in Medicine, 7(9), 626–632.

    PubMed  Google Scholar 

  • Gason, A. A., Sheffield, E., Bankier, A., Aitken, M. A., Metcalfe, S., Barlow Stewart, K., et al. (2003). Evaluation of a Tay-Sachs disease screening program. Clinical Genetics, 63(5), 386–392.

    PubMed  Google Scholar 

  • Geller, G., Tambor, E. S., Bernhardt, B. A., Fraser, G., & Wissow, L. S. (2003). Informed consent for enrolling minors in genetic susceptibility research: A qualitative study of at-risk children’s and parents’ views about children’s role in decision-making. Journal of Adolescent Health, 32(4), 260–271.

    PubMed  Google Scholar 

  • German Society of Human Genetics (1995a). Committee for public relations and ethical issues: Statement on genetic diagnosis in children and adolescents. Retrieved April, 2008, from http://www.medgenetik.de/sonderdruck/en/Genetic_diagnosis_in_children.pdf

  • German Society of Human Genetics (1995b). Kommission für Öffentlichkeitsarbeit und ethische Fragen der Gesellschaft für Humangenetik e.V. 1995. Stellungnahme zur Entdeckung des Brustkrebsgens BRCA1. Medizinische Genetik, 7, 8–10.

    Google Scholar 

  • Grodin, M. A., & Alpert, J. J. (1983). Informed consent and pediatric care. In G. B. Melton, G. P. Koocher, & M. J. Saks (Eds.), Children’s competence to consent (pp. 93–110). New York: Plenum Press.

    Google Scholar 

  • Grosfeld, F. J., Lips, C. J., Beemer, F. A., Blijham, G. H., Quirijnen, J. M., Mastenbroek, M. P., et al. (2000). Distress in MEN 2 family members and partners prior to DNA test disclosure. Multiple endocrine neoplasia type 2. American Journal of Medical Genetics, 91(1), 1–7.

    PubMed  Google Scholar 

  • Hall, A. (2007, July 17). Meeting report: Genetic testing of children. Retrieved March, 2008, from http://www.phgfoundation.org/news/3523/

  • Hoffmann, D. E., & Wulfsberg, E. A. (1995). Testing children for genetic predispositions: Is it in their best interest? Journal of Law and Medical Ethics, 23(4), 331–344.

    Google Scholar 

  • Hogben, S., & Boddington, P. (2006). The rhetorical construction of ethical positions: Policy recommendations for nontherapeutic genetic testing in childhood. Community Medicine, 3(2), 135–146.

    Google Scholar 

  • Holtzman, N., & Watson, M. (Eds.). (1998). Promoting safe and effective genetic testing in the United States: Final report of the Task Force on Genetic Testing. Baltimore, MD: Johns Hopkins University Press.

    Google Scholar 

  • Human Genetics Society of Australasia (2005). Child testing policy. Retrieved November, 2007, from http://www.hgsa.com.au/

  • Institute of Medicine (1994). Assessing genetic risks: Implications for health and social policy. Washington, DC: National Academy Press.

    Google Scholar 

  • International Huntington Association (1994). International Huntington Association and the World Federation of Neurology Research Group on Huntington’s Chorea. Guidelines for the molecular genetics predictive test in Huntington’s disease. Journal of Medical Genetics, 31(7), 555–559.

    Google Scholar 

  • Jarvinen, O., Aalto, A. M., Lehesjoki, A. E., Lindlof, M., Soderling, I., Uutela, A., et al. (1999). Carrier testing of children for two X linked diseases in a family based setting: A retrospective long term psychosocial evaluation. Journal of Medical Genetics, 36(8), 615–620.

    PubMed  Google Scholar 

  • Jarvinen, O., Hietala, M., Aalto, A. M., Arvio, M., Uutela, A., Aula, P., et al. (2000). A retrospective study of long-term psychosocial consequences and satisfaction after carrier testing in childhood in an autosomal recessive disease: Aspartylglucosaminuria. Clinical Genetics, 58(6), 447–454.

    PubMed  Google Scholar 

  • Jarvinen, O., Lehesjoki, A. E., Lindlof, M., Uutela, A., & Kaariainen, H. (2000). Carrier testing of children for two X-linked diseases: A retrospective study of comprehension of the test results and social and psychological significance of the testing. Pediatrics, 106(6), 1460–1465.

    PubMed  Google Scholar 

  • Kenen, R. H., & Schmidt, R. M. (1978). Stigmatization of carrier status: Social implications of heterozygote genetic screening programs. American Journal of Public Health, 68(11), 1116–1120.

    PubMed  Google Scholar 

  • Kessler, S. (1993). Forgotten person in the Huntington disease family. American Journal of Medical Genetics, 48(3), 145–150.

    PubMed  Google Scholar 

  • Kessler, S. (1994). Predictive testing for Huntington disease: A psychologist’s view. American Journal of Medical Genetics, 54(3), 161–166.

    PubMed  Google Scholar 

  • Kodish, E. D. (1999). Testing children for cancer genes: The rule of earliest onset. Journal of Pediatrics, 135(3), 390–395.

    PubMed  Google Scholar 

  • Koogler, T. K., Wilfond, B. S., & Ross, L. F. (2003). Lethal language, lethal decisions. Hastings Center Report, 33(2), 37–41.

    PubMed  Google Scholar 

  • Koopmans, J., Hiraki, S., & Ross, L. F. (2006). Attitudes and beliefs of pediatricians and genetic counselors regarding testing and screening for CF and G6PD: implications for policy. Am J Med Genet A, 140(21), 2305–2311.

    Google Scholar 

  • Kopelman, L. M. (2007). Using the Best Interests Standard to decide whether to test children for untreatable, late-onset genetic diseases. Journal of Medicine and Philosophy, 32(4), 375–394.

    PubMed  Google Scholar 

  • Kuczewski, M. G. (1996). Reconceiving the family. The process of consent in medical decision-making. Hastings Center Report, 26(2), 30–37.

    PubMed  Google Scholar 

  • Lerman, C., Schwartz, M. D., Lin, T. H., Hughes, C., Narod, S., & Lynch, H. T. (1997). The influence of psychological distress on use of genetic testing for cancer risk. Journal of Consulting and Clinical Psychology, 65(3), 414–420.

    PubMed  Google Scholar 

  • Lewis, C. E. (1983). Decision making related to health: When could/should children act responsibly? In G. B. Melton, G. P. Koocher, & M. J. Saks (Eds.), Children’s competence to consent (pp. 75–91). New York: Plenum Press.

    Google Scholar 

  • Littleton v Prange (1999). 9 S.W.3d 223, 1999 Tex. App. (Tex. C.A. 4th Dist.).

    Google Scholar 

  • Lloyd-Puryear, M. A., Tonniges, T., van Dyck, P. C., Mann, M. Y., Brin, A., Johnson, K., et al. (2006). American Academy of Pediatrics Newborn Screening Task Force recommendations: How far have we come? Pediatrics, 117(5 Pt 2), S194–S211.

    PubMed  Google Scholar 

  • Lynch, H. T., Lemon, S. J., Durham, C., Tinley, S. T., Connolly, C., Lynch, J. F., et al. (1997). A descriptive study of BRCA1 testing and reactions to disclosure of test results. Cancer, 79(11), 2219–2228.

    PubMed  Google Scholar 

  • Malpas, P. J. (2006). Why tell asymptomatic children of the risk of an adult-onset disease in the family but not test them for it? Journal of Medical Ethics, 32(11), 639–642.

    PubMed  Google Scholar 

  • Malpas, P. J. (2008). Predictive genetic testing of children for adult-onset diseases and psychological harm. Journal of Medical Ethics, 34(4), 275–278.

    PubMed  Google Scholar 

  • Marteau, T. M. (1995). Toward an understanding of the psychological consequences of screening. In R. T. Croyle (Ed.), Psychosocial effects of screening for disease prevention and detection (pp. 185–199). New York: Oxford University Press.

    Google Scholar 

  • McConkie-Rosell, A., & Spiridigliozzi, G. A. (2004). “Family matters”: A conceptual framework for genetic testing in children. Journal of Genetic Counseling, 13(1), 9–29.

    PubMed  Google Scholar 

  • Melancon, M. J., & De Braekeleer, M. (1996). Adolescents’ attitude towards carrier testing for cystic fibrosis. European Journal of Human Genetics, 4(6), 305–306.

    PubMed  Google Scholar 

  • Melton, G. B. (1983a). Children’s competence to consent: A problem in law and social science. In G. B. Melton, G. P. Koocher, & M. J. Saks (Eds.), Children’s competence to consent (pp. 1–18). New York: Plenum Press.

    Google Scholar 

  • Melton, G. B. (1983b). Decision making by children: Psychological risks and benefits. In G. B. Melton, G. P. Koocher, & M. J. Saks (Eds.), Children’s competence to consent (pp. 21–40). New York and London: Plenum Press.

    Google Scholar 

  • Michie, S., Bobrow, M., & Marteau, T. M. (2001). Predictive genetic testing in children and adults: A study of emotional impact. Journal of Medical Genetics, 38(8), 519–526.

    PubMed  Google Scholar 

  • Michie, S., French, D. P., & Marteau, T. M. (2002). Predictive genetic testing: Mediators and moderators of anxiety. International Journal of Behavioral Medicine, 9(4), 309–321.

    PubMed  Google Scholar 

  • Michie, S., & Marteau, T. M. (1995). Response to GIG’s response to the UK Clinical Genetics Society report “The genetic testing of children”. Journal of Medical Genetics, 32(10), 838.

    PubMed  Google Scholar 

  • National Consultative Ethics Committee for Health and Life Sciences (1995). Opinion and recommendations on ‘Genetics and medicine: From prediction to prevention. Retrieved April, 2010, from http://www.ccne-ethique.fr/

  • Nelson, R. M., Botkjin, J. R., Kodish, E. D., Levetown, M., Truman, J. T., Wilfond, B. S., et al. (2001). Ethical issues with genetic testing in pediatrics. Pediatrics, 107(6), 1451–1455.

    Google Scholar 

  • Newborn Screening Task Force (2000). Newborn screening: A blueprint for the future executive summary: Newborn Screening Task Force Report. Pediatrics, 106(2 Pt 2), 386–388.

    Google Scholar 

  • Novack, D. H., Plumer, R., Smith, R. L., Ochitill, H., Morrow, G. R., & Bennett, J. M. (1979). Changes in physicians’ attitudes toward telling the cancer patient. JAMA, 241(9), 897–900.

    PubMed  Google Scholar 

  • Oken, D. (1961). What to tell cancer patients. A study of medical attitudes. JAMA, 175, 1120–1128.

    PubMed  Google Scholar 

  • Park, V., Howard-Peebles, P., Sherman, S., Taylor, A., & Wulfsberg, E. (1994). Fragile X syndrome: Diagnostic and carrier testing. Working Group of the Genetic Screening Subcommittee of the Clinical Practice Committee. American College of Medical Genetics. American Journal of Medical Genetics, 53(4), 380–381.

    Google Scholar 

  • Patenaude, A. F. (1996). The genetic testing of children for cancer susceptibility: Ethical, legal, and social issues. Behavioral Sciences and the Law, 14(4), 393–410.

    PubMed  Google Scholar 

  • Paul, D. B. (2008). Patient advocacy in newborn screening: Continuities and discontinuities. American Journal of Medical Genetics Part C, Seminars in Medical Genetics, 148(1), 8–14.

    Google Scholar 

  • Pelias, M. K. (2006). Genetic testing of children for adult-onset diseases: Is testing in the child’s best interests? Mount Sinai Journal of Medicine, 73(3), 605–608.

    PubMed  Google Scholar 

  • Port, R. V., Arnold, J., Kerr, D., Gravish, N., & Winship, I. (2008). Cultural enhancement of a clinical service to meet the needs of indigenous people; Genetic service development in response to issues for New Zealand Maori. Clinical Genetics, 73(2), 132–138.

    PubMed  Google Scholar 

  • President’s Commission (1983). President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Screening and counseling for genetic conditions: A report on the ethical, social, and legal implications of genetic screening, counseling, and education programs. Washington, DC: US Government Printing Office.

    Google Scholar 

  • Prochazkova, K., Foretova, L., & Sedlacek, Z. (2008). A rare tumor and an ethical dilemma in a family with a germline TP53 mutation. Cancer Genetics and Cytogenetics, 180(1), 65–69.

    PubMed  Google Scholar 

  • Rhodes, R. (2006). Why test children for adult-onset genetic diseases? Mount Sinai Journal of Medicine, 73(3), 609–616.

    PubMed  Google Scholar 

  • Robertson, S., & Savulescu, J. (2001). Is there a case in favour of predictive genetic testing in young children? Bioethics, 15(1), 26–49.

    PubMed  Google Scholar 

  • Ross, L. F. (1997). Health care decision making by children. Is it in their best interest? Hastings Center Report, 27(6), 41–45.

    PubMed  Google Scholar 

  • Ross, L. F. (2000). Genetic testing of adolescents: Is it in their best interest? Archives of Pediatric and Adolescent Medicine, 154(8), 850–852.

    Google Scholar 

  • Ross, L. F. (2004). Should children and adolescents undergo genetic testing? Pediatric Annals, 33(11), 762–769.

    PubMed  Google Scholar 

  • Ross, L. F. (2006). Heterozygote carrier testing in high schools abroad: What are the lessons for the U.S.? Journal of Law and Medical Ethics, 34(4), 753–764.

    Google Scholar 

  • Ross, L. F., & Moon, M. R. (2000). Ethical issues in genetic testing of children. Archives of Pediatric and Adolescent Medicine, 154(9), 873–879.

    Google Scholar 

  • Rowley, P. T. (1984). Genetic screening: Marvel or menace? Science, 225(4658), 138–144.

    PubMed  Google Scholar 

  • Sarangi, S., & Clarke, A. (2002). Constructing an account by contrast in counselling for childhood genetic testing. Social Sciences and Medicine, 54(2), 295–308.

    Google Scholar 

  • Scriver, C. R., & Clow, C. L. (1990). Carrier screening for Tay-Sachs disease. Lancet, 336(8708), 191.

    PubMed  Google Scholar 

  • Senior, V., Marteau, T. M., & Peters, T. J. (1999). Will genetic testing for predisposition for disease result in fatalism? A qualitative study of parents responses to neonatal screening for familial hypercholesterolaemia. Social Science and Medicine, 48(12), 1857–1860.

    PubMed  Google Scholar 

  • Sharpe, N. F. (1993). Presymptomatic testing for Huntington disease: Is there a duty to test those under the age of eighteen years? American Journal of Medical Genetics, 46(2), 250–253.

    PubMed  Google Scholar 

  • Sigman, G. S., & O’Connor, C. (1991). Exploration for physicians of the mature minor doctrine. Journal of Pediatrics, 119(4), 520–525.

    PubMed  Google Scholar 

  • Skinner, D., Sparkman, K. L., & Bailey, D. B., Jr. (2003). Screening for fragile X syndrome: Parent attitudes and perspectives. Genetic Medicine, 5(5), 378–384.

    Google Scholar 

  • Smets, E. M., Stam, M. M., Meulenkamp, T. M., van Langen, I. M., Wilde, A. A., Wiegman, A., et al. (2008). Health-related quality of life of children with a positive carrier status for inherited cardiovascular diseases. American Journal of Medical Genetics Part A, 146(6), 700–707.

    Google Scholar 

  • Swiss Academy of Medical Sciences (1993). Genetic investigations in humans. Retrieved January, 2008, from http://www.samw.ch/

  • Tercyak, K. P., Hughes, C., Main, D., Snyder, C., Lynch, J. F., Lynch, H. T., et al. (2001). Parental communication of BRCA1/2 genetic test results to children. Patient Education and Counseling, 42(3), 213–224.

    PubMed  Google Scholar 

  • Tercyak, K. P., Peshkin, B. N., Streisand, R., & Lerman, C. (2001). Psychological issues among children of hereditary breast cancer gene (BRCA1/2) testing participants. Psychooncology, 10(4), 336–346.

    PubMed  Google Scholar 

  • Thomassen, R., Tibben, A., Niermeijer, M. F., van der Does, E., van de Kamp, J. J., & Verhage, F. (1993). Attitudes of Dutch general practitioners towards presymptomatic DNA-testing for Huntington disease. Clinical Genetics, 43(2), 63–68.

    PubMed  Google Scholar 

  • Tibben, A., Frets, P. G., van de Kamp, J. J., Niermeijer, M. F., Vegter-van der Vlis, M., Roos, R. A., et al. (1993). Presymptomatic DNA-testing for Huntington disease: Pretest attitudes and expectations of applicants and their partners in the Dutch program. American Journal of Medical Genetics, 48(1), 10–16.

    PubMed  Google Scholar 

  • Tolstoi, L. N. (1961). [The death of Iwan Iljitsch] Der Tod des Iwan Iljitsch. In J. Hahn (Ed.), Leo N. Tolstoi: Volkserzählungen, Jugenderinnerungen (pp. 333–402). Darmstadt: Wissenschaftliche Buchgesellschaft.

    Google Scholar 

  • Valverde, K. D. (2006). Why me? Why not me? Journal of Genetic Counseling, 15(6), 461–463.

    PubMed  Google Scholar 

  • Weithorn, L. A. (1983). Involving children in decisions affecting their own welfare: Guidelines for professionals. In G. B. Melton, G. P. Koocher, & M. J. Saks (Eds.), Children’s competence to consent (pp. 235–260). New York: Plenum Press.

    Google Scholar 

  • Welkenhuysen, M., Evers-Kiebooms, G., Decruyenaere, M., Van den Berghe, H., Bande-Knops, J., & Van Gerven, V. (1996). Adolescents’ attitude towards carrier testing for cystic fibrosis and its relative stability over time. European Journal of Human Genetics, 4(1), 52–62.

    PubMed  Google Scholar 

  • Wertz, D. C. (1994). Patients’ ethical views on genetic privacy, disclosure to relatives, and testing children. American Journal of Human Genetics, 55, a295.

    Google Scholar 

  • Wertz, D. C. (1998). International perspectives. In A. Clarke (Ed.), The genetic testing of children (pp. 271–287). Washington, DC: Bios Scientific Publishers.

    Google Scholar 

  • Wertz, D. C., Fanos, J. H., & Reilly, P. R. (1994a). Genetic testing for children and adolescents. Who decides? JAMA, 272(11), 875–881.

    Google Scholar 

  • Wertz, D. C., Fanos, J. H., & Reilly, P. R. (1994b). Testing healthy children and adolescents: Recommendations for avoiding harm. Genetic Resources, 8(2), 16–20.

    Google Scholar 

  • Wertz, D. C., & Reilly, P. R. (1997). Laboratory policies and practices for the genetic testing of children: A survey of the Helix network. American Journal of Human Genetics, 61(5), 1163–1168.

    PubMed  Google Scholar 

  • Wiggins, S., Green, T., Adam, S., & Hayden, M. R. (1996). A long term (ca 5 years) prospective assessment of psychological consequences of predictive testing for Huntington disease (HD). American Journal of Human Genetics, 59(4), A7.

    PubMed  Google Scholar 

  • Wiggins, S., Whyte, P., Huggins, M., Adam, S., Theilmann, J., Bloch, M., et al. (1992). The psychological consequences of predictive testing for Huntington’s disease. Canadian Collaborative Study of Predictive Testing. New England Journal of Medicine, 327(20), 1401–1405.

    PubMed  Google Scholar 

  • Wilfond, B. S., & Nolan, K. (1993). National policy development for the clinical application of genetic diagnostic technologies. Lessons from cystic fibrosis. JAMA, 270(24), 2948–2954.

    PubMed  Google Scholar 

  • Wilfond, B., & Ross, L. F. (2009). From genetics to genomics: Ethics, policy, and parental decision-making. Journal of Pediatric Psychology, 34(6), 635–647.

    Google Scholar 

  • World Federation of Neurology (1994). Guidelines for the molecular genetics predictive test in Huntington’s disease. International Huntington Association (IHA) and the World Federation of Neurology (WFN) Research Group on Huntington’s Chorea. Neurology, 44(8), 1533–1536.

    Google Scholar 

  • Youngner, S. J. (1988). Who defines futility? JAMA, 260(14), 2094–2095.

    PubMed  Google Scholar 

  • Zeesman, S., Clow, C. L., Cartier, L., & Scriver, C. R. (1984). A private view of heterozygosity: Eight-year follow-up study on carriers of the Tay-Sachs gene detected by high school screening in Montreal. American Journal of Medical Genetics, 18(4), 769–778.

    PubMed  Google Scholar 

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  1. University of Geneva, Geneva, Switzerland

    Bernice S. Elger

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  1. Division of Health Outcomes & Health Beh, Department of Oncology, Georgetown University, Whitehaven St, NW 3300, Washington, 20007, District of Columbia, USA

    Kenneth P. Tercyak

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Elger, B.S. (2010). Ethical, Legal and Social Issues in the Genetic Testing of Minors. In: Tercyak, K. (eds) Handbook of Genomics and the Family. Issues in Clinical Child Psychology. Springer, Boston, MA. https://doi.org/10.1007/978-1-4419-5800-6_20

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