Comparison of Informed Consent Preferences for Multiplex Genetic Carrier Screening among a Diverse Population

Journal of Genetic Counseling

Volumn 25, Issue 1, 2016, Pages 166-178

  Reeves, Ashley ^a   Trepanier, Angela ^b  

^a WILLIAM BEAUMONT HOSPITAL   (United States)

^b WAYNE STATE UNIVERSITY   (United States)

Author keywords

Attitudes; Decision making; Genetic screening; Informed consent; Multiplex carrier screening; Preferences; Reproductive care

Indexed keywords

CONSENSUS DEVELOPMENT; DECISION MAKING; E-MAIL; HETEROZYGOTE; HUMAN; INFORMED CONSENT; MAJOR CLINICAL STUDY; SCREENING; STAFF; SYMPTOM; UNIVERSITY STUDENT; ADULT; FEMALE; GENETIC SCREENING; HETEROZYGOTE DETECTION; MALE; PARENT; PATIENT PREFERENCE; PERCEPTION; PSYCHOLOGY; STATISTICS AND NUMERICAL DATA;

ADULT; CHOICE BEHAVIOR; DECISION MAKING; FEMALE; GENETIC TESTING; HETEROZYGOTE DETECTION; HUMANS; MALE; PARENTS; PATIENT PREFERENCE; SOCIAL PERCEPTION;

EID: 84955468286     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-015-9854-4     Document Type: Article

References (26)

1. American College of Obstetricians and Gynecologists Committee on Ethics. (2009). ACOG committee opinion no. 439. Informed consent. Obstetrics and Gynecology, 114(2), 401–408. doi:10.1097/AOG.0b013e3181b48f7f.
2. American College of Obstetricians and Gynecologists Committee on Genetics. (2011). ACOG committee opinion no. 486. Update on carrier screening for cystic fibrosis. Obstetrics and Gynecology, 117(4), 1028–31. doi:10.1097/AOG.0b013e31821922c2.
3. Avard, D., & Harmsen, E. (2010). Informed consent and multiplex genetic screening. In: Encyclopedia of life sciences (pp. 1–6). Chichester: Wiley. doi:10.1002/9780470015902.a0005642.pub2.
4. Bekker, H., Thornton, J. G., Airey, C. M., Connelly, J. B., Hewison, J., Robinson, M. B., & Pearman, A. D. (1999). Informed decision making: an annotated bibliography and systematic review. Health Technology and Assessments, 3(1), 1–156.
5. Bell, C. J., Dinwiddie, D. L., Miller, N. A., Hateley, S. L., Ganusova, E. E., Mudge, J., & Kingsmore, S. F. (2011). Carrier testing for severe childhood recessive diseases by next-generation sequencing. Science Translational Medicine, 3(65), 65ra4. doi:10.1126/scitranslmed.3001756.
6. Berger, K. (2003). Informed consent: information or knowledge? Medicine and Law, 22(4), 743–50.
7. Bradbury, A. R., Patrick-Miller, L., & Domcheck, S. (2014). Multiplex genetic testing: reconsidering utility and informed consent in the era of next-generation sequencing. Commentary. Genetics in Medicine. doi:10.1038/gim.2014.85.
8. Bunnik, E. M., Janssens, A. C. J. W., & Schermer, M. H. N. (2013). A tiered-layered-staged model for informed consent in personal genome testing. European Journal of Human Genetics, 21, 596–601. doi:10.1038/ejhg.2012.237.
9. Burke, W., Tanini, B., Press, N. A., & Evans, J. P. (2011). Genetic screening. Epidemiological Reviews, 33(1), 148–64. doi:10.1093/epirev/mxr008.
10. Dormandy, E., Tsui, E.Y., & Marteau, T. M. (2007). Development of a measure of informed choice suitable for use in low literacy populations. Patient Education and Counseling, 66(3), 278–95. doi:10.1016/j.pec.2007.01.001.
11. Edwards, J. G., Feldman, G., Goldberg, J., Gregg, A. R., Norton, M. E., Rose, N. C., Schneider, A., Stoll, K., Wapner, R., & Watson, M. S. (2015). Expanded carrier screening in reproductive medicine-points to consider. A joint statement of the American college of medical genetics, American college of obstetricians and gynecologists, national society of genetic counselors, perinatal quality foundation, and society for maternal fetal medicine. Obstetrics and Gynecology, 125(3), 653–662. doi:10.1097/AOG.0000000000000666.
12. Elias, S., & Annas, G. J. (1994). Generic consent for genetic screening. The New England Journal of Medicine, 330(22), 1611–3. doi:10.1056/NEJM199406023302213
13. Flesch, R. (1948). A new readability yardstick. Journal of Applied Psychology, 32(3), 221–233.
14. Geller, G., Strauss, M., Bernhardt, B. A., & Holtzman, N. A. (1997). Decoding” informed consent. Insights from women regarding breast cancer susceptibility testing. Hastings Center Report, 27(2), 28–33.
15. Grody, W. W., Thompson, B. H., Gregg, A. R., Bean, L. H., Monaghan, K. G., Schneider, A., & Lebo, R. V. (2013). ACMG position statement on prental/preconception expanded carrier screening. Genetics in Medicine, 15(6), 482–483. doi:10.1038/gim.2013.47.
16. Kloza, E. M., Haddow, P. K., Halliday, J. V., O’Brien, B. M., Lambert-Messerlian, G. M., & Palomaki, G. E. (2015). Evaluation of patient education materials: the example of circulating cell free DNA testing for aneuploidy. Journal of Genet Counsel, 24, 259–266. doi:10.1007/s10897-014-9758-8.
17. Klugman, S., & Gross, S. J. (2010). Ashkenazi Jewish screening in the twenty-first century. Obstetrics and Gynecology Clinics of North America, 37(1), 37–46. doi:10.1016/j.ogc.2010.01.001.
18. National Human Genome Research Institute (2008). Population-based carrier screening for single gene disorders: Lessons learned and new opportunities. Meeting Summary. Rockville, MD. Last accessed on 11/12/14 at http://www.genome.gov/27026048.
19. Ormond, K. E., Iris, M., Banuvar, S., Minogue, J., Annas, G. J., & Elias, S. (2007). What do patients prefer: informed consent models for genetic carrier testing. Journal of Genetic Counseling, 16(4), 539–50. doi:10.1007/s10897-007-9094-3.
20. Ormond, K. E., Banuvar, S., Daly, A., Iris, M., Minogue, J., & Elias, S. (2009). Information preferences of high literacy pregnant women regarding informed consent models for genetic carrier screening. Patient Education and Counseling, 75(2), 244–50. doi:10.1016//j.pec.2008.09.020.
21. Pletcher, B. A., Gross, S. J., Monaghan, K. G., Driscoll, D. A., & Watson, M. S. (2008). The future is now: carrier creening for all populations. Genetics in Medicine, 10(1), 33–6. doi:10.1097/GIM.0b013e31815f5934.
22. Ready, K., Haque, I. S., Srinivasan, B. S., & Marshall, J. R. (2012). Knowledge and attitudes regarding expanded genetic carrier screening among women’s healthcare providers. Fertility and Sterility, 97(2), 407–13. doi:10.1016/j.fertnstert.2011.11.007.
23. Ross, L. F. (2012). A re-examination of the use of ethnicity in prenatal carrier testing. American Journal of Medical Genetics A, 158A(1), 19–23. doi:10.1002/ajmg.a.34361.
24. Srinivasan, B. S., Evans, E. A., Flannick, J., Patterson, A. S., Chang, C. C., Pham, T., & Patrizio, P. (2010). A universal carrier test for the long tail of Mendelian disease. Reproductive Biomedicine Online, 21(4), 537–51. doi:10.1016/j.rmbo.2010.05.012.
25. Tanner, A. K., Valencia, C. A., Rhodenizer, D., Espirages, M., DaSilva, C., Borsuk, L., & Hegde, M. (2014). Development and performance of a comprehensive targeted sequencing assay for pan-ethnic screening of carrier status. Journal of Molecular Diagnostics, 16(3), 350–360. doi:10.1016/j.jmoldx.2013.12.003.
26. Wayne State University Fact Book. (2012). Who Are WSU’s students? Retrieved August 2012. http://wayne.edu/facts/2012/students/who-are.php.