View Item 

Show simple item record

Prenatal Testing for Adult‐Onset Conditions: the Position of the National Society of Genetic Counselors
dc.contributor.authorHercher, Laura
dc.contributor.authorUhlmann, Wendy R.
dc.contributor.authorHoffman, Erin P.
dc.contributor.authorGustafson, Shanna
dc.contributor.authorChen, Kelly M.
dc.date.accessioned2019-01-15T20:25:32Z
dc.date.available2019-01-15T20:25:32Z
dc.date.issued2016-12
dc.identifier.citationHercher, Laura; Uhlmann, Wendy R.; Hoffman, Erin P.; Gustafson, Shanna; Chen, Kelly M. (2016). "Prenatal Testing for Adult‐Onset Conditions: the Position of the National Society of Genetic Counselors." Journal of Genetic Counseling 25(6): 1139-1145.
dc.identifier.issn1059-7700
dc.identifier.issn1573-3599
dc.identifier.urihttps://hdl.handle.net/2027.42/146906
dc.description.abstractAdvances in genetic testing and the availability of such testing in pregnancy allows prospective parents to test their future child for adult‐onset conditions. This ability raises several complex ethical issues. Prospective parents have reproductive rights to obtain information about their fetus. This information may or may not alter pregnancy management. These rights can be in conflict with the rights of the future individual, who will be denied the right to elect or decline testing. This paper highlights the complexity of these issues, details discussions that went into the National Society of Genetic Counselors (NSGC) Public Policy Task Force’s development of the Prenatal testing for Adult‐Onset Conditions position statement adopted in November 2014, and cites relevant literature on this topic through December 2015. Issues addressed include parental rights and autonomy, rights of the future child, the right not to know, possible adverse effects on childhood and the need for genetic counseling. This paper will serve as a reference to genetic counselors and healthcare professionals when faced with this situation in clinical practice.
dc.publisherSpringer US
dc.publisherWiley Periodicals, Inc.
dc.subject.otherThe National Society of genetic counselors
dc.subject.otherPosition statement
dc.subject.otherPrenatal testing
dc.subject.otherAdult‐onset conditions
dc.subject.otherGenetic counseling
dc.subject.otherReproductive rights
dc.subject.otherEthical issues
dc.titlePrenatal Testing for Adult‐Onset Conditions: the Position of the National Society of Genetic Counselors
dc.typeArticleen_US
dc.rights.robotsIndexNoFollow
dc.subject.hlbsecondlevelHuman Genetics
dc.subject.hlbtoplevelHealth Sciences
dc.description.peerreviewedPeer Reviewed
dc.description.bitstreamurlhttps://deepblue.lib.umich.edu/bitstream/2027.42/146906/1/jgc41139.pdf
dc.identifier.doi10.1007/s10897-016-9992-3
dc.identifier.sourceJournal of Genetic Counseling
dc.identifier.citedreferenceNational Society of Genetic Counselors ( 1992 ). NSGC Code of Ethics. Retrieved November 1, 2015 from http://nsgc.org/p/cm/ld/fid=12.
dc.identifier.citedreferenceBernhardt, C., Schwan, A., Kraus, P., Epplen, J., & Kuntsmann, E. ( 2009 ). Decreasing uptake of predictive testing for Huntington’s disease in a German Centre: 12 years’ experience (1993–2004). European Journal of Human Genetics, 17, 295 – 300. doi:10.1038/ejhg.2008.164.
dc.identifier.citedreferenceBorry, P., Shabani, M., & Howard, H. ( 2014 ). Is there a right time to know? The right not to know and genetic testing in children. Journal of Law, Medicine and Ethics, 42, w19 – w27. doi:10.1111/jlme.12115.
dc.identifier.citedreferenceBotkin, J., Belmont, J., Berg, J., Berkman, B., Bombard, Y., Holm, I., Levy, H., et al. ( 2015 ). Points to consider: ethical, legal, and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics, 97, 6 – 21. doi:10.1016/j.ajhg.2015.07.013.
dc.identifier.citedreferenceCarss, K., Hillman, S., Parthiban, V., McMullan, D., Mahrer, E., Kilby, M., & Hurles, M. ( 2014 ). Exome sequencing improves genetic diagnosis of structural fetal abnormalities revealed by ultrasound Human Molecular Genetics, 23, 3269–3277. doi:10.1093/hmg/ddu038.
dc.identifier.citedreferenceCreighton, S., Almqvist, E., MacGregor, D., Fernandez, B., Hogg, H., Beis, J., Welch, J., et al. ( 2003 ). Predictive, pre‐natal and diagnostic genetic testing for Huntington’s disease: the experience in Canada from 1987 to 2000. Clinical Genetics, 63, 462 – 475.
dc.identifier.citedreferenceGreen M, Solnit AJ ( 1964 ). Reaction to the threatened loss of a child: a vulnerable child syndrome. Pediatrics, 34, 53 – 66.
dc.identifier.citedreferenceGregg, A., Gross, S., Best, R., Monaghan, K., Bajaj, K., Skotko, B., Thompson, B., et al. ( 2013 ). ACMG statement on noninvasive prenatal screening for fetal aneuploidy Genetics in Medicine, 15, 395 – 388. doi:10.1038/gim.2013.29.
dc.identifier.citedreferenceHillman, S., Williams, D., Carss, K., McMullan, D., Hurles, M., & Kilby, M. D. ( 2015 ). Prenatal exome sequencing for fetuses with structural abnormalities: the next step. Ultrasound in Obstetrics & Gynecology, 45, 4 – 9. doi:10.1002/uog.14653.
dc.identifier.citedreferenceKitzman, J., Snyder, M., Ventura, M., Lewis, A., Qiu, R., Simmons, L., Gammill, H., et al. ( 2012 ). Noninvasive whole‐genome sequencing of a human fetus. Science Translational Medicine, 4, 137ra76. doi: 10.1126/scitranslmed.3004323.
dc.identifier.citedreferenceKnoppers, B. M. ( 2014 ). From the right to know to the right not to know. Journal of Law, Medicine and Ethics, 42, 6 – 10. doi:10.1111/jlme.12113.
dc.identifier.citedreferenceLeennen, C. H., Heijer, M. D., van der Meer, C., Kuipers, E. J., van Leerdam, M. E., & Wagner, A. ( 2016 ). Genetic testing for lynch syndrome: family communication and motivation. Familial Cancer, 15 ( 1 ), 63 – 73. doi:10.1007/s10689‐015‐9842‐8.
dc.identifier.citedreferenceMacLeod, R., Tibben, A., Frontali, M., Evers‐Kiebooms, G., Jones, A., Martinz‐Descales, A., & Editorial Committee and Working Group “Genetic testing Counselling” of the European Huntington Disease Network. ( 2013 ). Recommendations for the predictive genetic test in Huntington’s disease. Clinical Genetics, 83, 221 – 231. doi:10.1111/j.1399‐0004.2012.01900.
dc.identifier.citedreferenceMichie, S., Bobrow, M., Marteau, T., & on behalf of the FAP Collaborative Research Group. ( 2001 ). Predictive genetic testing in children and adults: a study of emotional impact. Journal of Medical Genetics, 38, 519 – 526. doi:10.1136/jmg.38.8.519.
dc.identifier.citedreferenceNational Comprehensive Cancer Network, NCCN Guidelines, Genetic/Familial High Risk Assessment: Breast and Ovarian, 2. ( 2015 ). Retrieved November 1, 2015 from http://www.nccn.org/.
dc.identifier.citedreferenceNational Human Genome Research Institute Genome Statute and Legislation Database (n.d.). Retrieved from http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm.
dc.identifier.citedreferenceNational Society of Genetic Counselors ( 2010 ). NSGC Position Statement: Reproductive Freedom. Retrieved November 1, 2015 from http://nsgc.org/p/bl/et/blogaid=35.
dc.identifier.citedreferenceNational Society of Genetic Counselors ( 2012 ) NSGC Position Statement: Genetic Testing of Minors for Adult‐Onset Conditions. Retrieved November 1, 2015 from http://nsgc.org/p/bl/et/blogaid=28.
dc.identifier.citedreferenceNational Society of Genetic Counselors ( 2014 ). NSGC Position Statement: Prenatal Testing for Adult‐Onset Conditions. Retrieved November 1, 2015 http://nsgc.org/p/bl/et/blogaid=259.
dc.identifier.citedreferencePelias, M. ( 2006 ). Genetic testing of children for adult‐onset diseases: is testing in the child’s best interests? Mt. Sinai Journal of Medicine, 73, 605 – 608.
dc.identifier.citedreferenceRoss, L., Saal, H., David, K., Anderson, R., & the American Academy of Pediatrics; American College of Medical Genetics and Genomics ( 2013 ). Technical report: ethical and policy issues in genetic testing and screening of children. Genetics in Medicine, 15, 234 – 245. doi:10.1038/gim.2012.176.
dc.identifier.citedreferenceTakala, T. ( 1999 ). The right to genetic ignorance confirmed. Bioethics, 13, 288 – 293. doi:10.1111/1467‐8519.00157.
dc.identifier.citedreferenceTassicker, R., Teltscher, B., Trembath, M., Collins, V., Sheffield, L., Chiu, E., Gurrin, L., & Delatycki, M. ( 2009 ). Problems assessing uptake of Huntington disease predictive testing and a proposed solution. European Journal of Human Genetics, 17, 66 – 70. doi:10.1038/ejhg.2008.
dc.identifier.citedreferenceVan Lith, J., Faas, B., & Bianchi, D. ( 2015 ). Current controversies in prenatal diagnosis 1: NIPT for chromosome abnormalities should be offered to women with low a priori risk. Prenatal Diagnosis, 35, 8 – 14. doi:10.1002/pd.4530.
dc.identifier.citedreferenceWade, C., Wilfond, B., & McBride, C. ( 2010 ). Effects of genetic risk information on children’s psychosocial wellbeing. Genetics in Medicine, 12, 317. doi:10.1097/GIM.0b013e3181de695c.
dc.identifier.citedreferenceWilson, R., Ledbetter, D., & Pergament, E. ( 2015 ). Current controversies in prenatal diagnosis 3: the ethical and counseling implications of new genomic technologies: all pregnant women should be offered prenatal diagnostic genome‐wide testing for prenatally identified fetal congenital anomalies. Prenatal Diagnosis, 35, 19 – 22. doi:10.1002/pd.4531.
dc.identifier.citedreferenceAmerican College of Obstetricians and Gynecologists ( 2008 ). Ethical issues in genetic testing. ACOG Committee opinion no. 410. Obstetrics and Gynecology, 111, 1495 – 1502.
dc.identifier.citedreferenceAmerican College of Obstetricians and Gynecologists ( 2015 ). Cell‐free DNA screening for fetal aneuploidy. ACOG Committee opinion no. 640. Obstetrics and Gynecology, 126, e31 – e37.
dc.identifier.citedreferenceAmerican 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.
dc.owningcollnameInterdisciplinary and Peer-Reviewed


Files in this item

Name:
jgc41139.pdf
Size:
257.2KB
Format:
PDF
View/Open

Show simple item record

Remediation of Harmful Language

The University of Michigan Library aims to describe library materials in a way that respects the people and communities who create, use, and are represented in our collections. Report harmful or offensive language in catalog records, finding aids, or elsewhere in our collections anonymously through our metadata feedback form. More information at Remediation of Harmful Language.

Accessibility

If you are unable to use this file in its current format, please select the Contact Us link and we can modify it to make it more accessible to you.