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Volumn 15, Issue 7, 2015, Pages 3-14

Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice

Author keywords

decision making; genetics (clinical); informed consent; law; medical humanities; public health

Indexed keywords

DECISION MAKING; DNA SEQUENCE; ECONOMICS; ETHICS; GENETIC DISEASES, INBORN; GENETIC PREDISPOSITION; GENETIC PRIVACY; GENETIC SCREENING; GENETICS; GENOMICS; HUMAN; LEGISLATION AND JURISPRUDENCE; METAGENOMICS; PATERNALISM; PERSONAL AUTONOMY; PRIMARY PREVENTION; PROCEDURES; PUBLIC HEALTH; TRENDS;

EID: 84938515952     PISSN: 15265161     EISSN: 15360075     Source Type: Journal    
DOI: 10.1080/15265161.2015.1039721     Document Type: Article
Times cited : (31)

References (58)
  • 1
    • 0016822465 scopus 로고
    • Genetic counseling
    • Ad Hoc Committee on Genetic Counseling of the American Society of Human Genetics (ASHG). 1975. Genetic counseling. American Journal of Human Genetics 27(2): 240–242.
    • (1975) American Journal of Human Genetics , vol.27 , Issue.2 , pp. 240-242
  • 2
    • 84880515119 scopus 로고    scopus 로고
    • Not-so-incidental findings: The ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing
    • M.Allyse, and M.Michie. 2013. Not-so-incidental findings: The ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing. Trends in Biotechnology 31(8): 439–41. http://dx.doi.org/10.1016/j.tibtech.2013.04.006.
    • (2013) Trends in Biotechnology , vol.31 , Issue.8 , pp. 439-441
    • Allyse, M.1    Michie, M.2
  • 5
    • 84938512706 scopus 로고    scopus 로고
    • November
    • American Medical Association Council on Ethical and Judicial Affairs. 2001. Code of medical ethics: Opinion 10.015: The patient–physician relationship. Available at: http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion10015.page? (accessed November26, 2014).
    • (2001) Code of medical ethics: Opinion 10.015: The patient–physician relationship
  • 6
    • 6444221054 scopus 로고    scopus 로고
    • The right not to know: An autonomy-based approach
    • R.Andorno 2004. The right not to know: An autonomy-based approach. Journal of Medical Ethics 30(5): 435–440. http://dx.doi.org/10.1136/jme.2002.001578.
    • (2004) Journal of Medical Ethics , vol.30 , Issue.5 , pp. 435-440
    • Andorno, R.1
  • 7
    • 84867724867 scopus 로고    scopus 로고
    • An informatics approach to analyzing the incidentalome
    • J.S.Berg,, M.Adams, N.Nassar, et al. 2013. An informatics approach to analyzing the incidentalome. Genetics in Medicine 15(1): 36–44. http://dx.doi.org/10.1038/gim.2012.112.
    • (2013) Genetics in Medicine , vol.15 , Issue.1 , pp. 36-44
    • Berg, J.S.1    Adams, M.2    Nassar, N.3
  • 8
    • 79959276553 scopus 로고    scopus 로고
    • Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time
    • J.S.Berg,, M.J.Khoury, and J.P.Evans. 2011. Deploying whole genome sequencing in clinical practice and public health: Meeting the challenge one bin at a time. Genetics in Medicine 13(6): 499–504. http://dx.doi.org/10.1097/GIM.0b013e318220aaba.
    • (2011) Genetics in Medicine , vol.13 , Issue.6 , pp. 499-504
    • Berg, J.S.1    Khoury, M.J.2    Evans, J.P.3
  • 9
    • 84897690337 scopus 로고    scopus 로고
    • The “Right not to Know” in the genomic era: Time to break from tradition?
    • B.E.Berkman,, and S.C.Hull. 2014. The “Right not to Know” in the genomic era: Time to break from tradition? American Journal of Bioethics 14(3): 28–31. http://dx.doi.org/10.1080/15265161.2014.880313.
    • (2014) American Journal of Bioethics , vol.14 , Issue.3 , pp. 28-31
    • Berkman, B.E.1    Hull, S.C.2
  • 10
    • 84887439425 scopus 로고    scopus 로고
    • Recommendations for returning genomic incidental findings? We need to talk!
    • W.Burke,, A.H.M.Antommaria, R.Bennett, et al. 2013. Recommendations for returning genomic incidental findings? We need to talk! Genetics in Medicine 15(11): 854–859. http://dx.doi.org/10.1038/gim.2013.113.
    • (2013) Genetics in Medicine , vol.15 , Issue.11 , pp. 854-859
    • Burke, W.1    Antommaria, A.H.M.2    Bennett, R.3
  • 11
    • 84938499238 scopus 로고    scopus 로고
    • Canterbury v. Spence, 464 F.2d 772 (D.C. Cir. 1972).
  • 12
    • 85145112057 scopus 로고    scopus 로고
    • The right to know and the right not to know – ten years on
    • R.Chadwick, 2009. The right to know and the right not to know – ten years on. In Disclosure dilemmas, ed. C.Rehmann-Sutter and H.Müller, 9–18. Burlington, VT: Ashgate.
    • (2009) Disclosure dilemmas , pp. 9-18
    • Chadwick, R.1
  • 13
    • 84938531413 scopus 로고
    • Cruzan v. Mo. Dep't of Health 497 U.S. 261. (1990).
    • (1990)
  • 14
    • 84938525827 scopus 로고    scopus 로고
    • Culbertson v. Mertnitz. 602 N.E. 2d 98 (Ind. 1992).
  • 15
    • 84887420253 scopus 로고    scopus 로고
    • Finding common ground
    • J.P.Evans, 2013. Finding common ground. Genetics in Medicine 15(11): 852–853. http://dx.doi.org/10.1038/gim.2013.150.
    • (2013) Genetics in Medicine , vol.15 , Issue.11 , pp. 852-853
    • Evans, J.P.1
  • 16
    • 83055182072 scopus 로고    scopus 로고
    • Next-generation DNA sequencing, regulation, and the limits of paternalism: The next challenge
    • J.P.Evans,, and J.S.Berg. 2011. Next-generation DNA sequencing, regulation, and the limits of paternalism: The next challenge. Journal of the American Medical Association 306(21): 2376–2377.
    • (2011) Journal of the American Medical Association , vol.306 , Issue.21 , pp. 2376-2377
    • Evans, J.P.1    Berg, J.S.2
  • 17
    • 84877253933 scopus 로고    scopus 로고
    • We screen newborns don't we?: Realizing the promise of public health genomics
    • J.P.Evans,, J.S.Berg, A.F.Olshan, et al. 2013. We screen newborns don't we?: Realizing the promise of public health genomics. Genetics in Medicine 15(5): 332–334. http://dx.doi.org/10.1038/gim.2013.11.
    • (2013) Genetics in Medicine , vol.15 , Issue.5 , pp. 332-334
    • Evans, J.P.1    Berg, J.S.2    Olshan, A.F.3
  • 18
    • 84867640202 scopus 로고    scopus 로고
    • BRCA 1/2 testing: Uptake, phenocopies, and strategies to improve detection rates in initially negative families
    • C.Fischer,, C.Engel, C.Sutter, et al. 2012. BRCA 1/2 testing: Uptake, phenocopies, and strategies to improve detection rates in initially negative families. Clinical Genetics 82(5): 478–483. http://dx.doi.org/10.1111/j.1399-0004.2011.01788.x.
    • (2012) Clinical Genetics , vol.82 , Issue.5 , pp. 478-483
    • Fischer, C.1    Engel, C.2    Sutter, C.3
  • 19
    • 84893081357 scopus 로고    scopus 로고
    • The NCGENES project: Exploring the new world of genomic sequencing
    • A.K.M.Foreman,, K.Lee, and J.P.Evans. 2013. The NCGENES project: Exploring the new world of genomic sequencing. North Carolina Medical Journal 74(6): 500–504.
    • (2013) North Carolina Medical Journal , vol.74 , Issue.6 , pp. 500-504
    • Foreman, A.K.M.1    Lee, K.2    Evans, J.P.3
  • 21
    • 84880535720 scopus 로고    scopus 로고
    • ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing
    • R.C.Green,, J.S.Berg, W.W.Grody, et al. 2013. ACMG recommendations for reporting incidental findings in clinical exome and genome sequencing. Genetics in Medicine 15(7): 565–574. http://dx.doi.org/10.1038/gim.2013.73.
    • (2013) Genetics in Medicine , vol.15 , Issue.7 , pp. 565-574
    • Green, R.C.1    Berg, J.S.2    Grody, W.W.3
  • 22
    • 0035677057 scopus 로고    scopus 로고
    • Ignorance, information and autonomy
    • J.Harris,, and K.Keywood. 2001. Ignorance, information and autonomy. Theoretical Medicine & Bioethics 22(5): 415–436. http://dx.doi.org/10.1023/A:1013058801622.
    • (2001) Theoretical Medicine & Bioethics , vol.22 , Issue.5 , pp. 415-436
    • Harris, J.1    Keywood, K.2
  • 23
    • 79960481627 scopus 로고    scopus 로고
    • Reconsidering the criteria for evaluating proposed screening programs: Reflections from 4 current and former members of the U.S. Preventive Services Task Force
    • R.P.Harris,, G.F.Sawaya, V.A.Moyer, and N.Calonge. 2011. Reconsidering the criteria for evaluating proposed screening programs: Reflections from 4 current and former members of the U.S. Preventive Services Task Force. Epidemiologic Reviews 33: 20–35.
    • (2011) Epidemiologic Reviews , vol.33 , pp. 20-35
    • Harris, R.P.1    Sawaya, G.F.2    Moyer, V.A.3    Calonge, N.4
  • 25
    • 84871863427 scopus 로고    scopus 로고
    • Lynch syndrome
    • November
    • W.Kohlmann,, and S.B.Gruber. 2014. Lynch syndrome, GeneReviews. Available at: http://www.ncbi.nlm.nih.gov/books/NBK1211 (accessed November26, 2014).
    • (2014) GeneReviews
    • Kohlmann, W.1    Gruber, S.B.2
  • 26
    • 84961290283 scopus 로고    scopus 로고
    • Recognizing the right not to know: Conceptual, professional, and legal implications
    • G.Laurie, 2014. Recognizing the right not to know: Conceptual, professional, and legal implications. Journal of Law Medicine & Ethics 42(1): 53–62.
    • (2014) Journal of Law Medicine & Ethics , vol.42 , Issue.1 , pp. 53-62
    • Laurie, G.1
  • 27
    • 84921649795 scopus 로고    scopus 로고
    • The fiduciary relationship model for managing clinical genomic “incidental” findings
    • G.Lázaro-Muñoz, 2014. The fiduciary relationship model for managing clinical genomic “incidental” findings. Journal of Law, Medicine & Ethics 42(4): 576–589.
    • (2014) Journal of Law, Medicine & Ethics , vol.42 , Issue.4 , pp. 576-589
    • Lázaro-Muñoz, G.1
  • 28
    • 84921650130 scopus 로고    scopus 로고
    • Patients can now choose not to know their own DNA secrets
    • D.F.Maron, 2014. Patients can now choose not to know their own DNA secrets. Scientific American, April 1. Available at: http://www.scientificamerican.com/article/patients-can-now-choose-not-to-know-their-own-dna-secrets/ (accessed November26, 2014).
    • (2014) Scientific American
    • Maron, D.F.1
  • 29
    • 84878354128 scopus 로고    scopus 로고
    • Ethics and genomic incidental findings
    • A.L.McGuire,, S.Joffe, B.A.Koenig, et al. 2013. Ethics and genomic incidental findings. Science 340: 1047–1048.
    • (2013) Science , vol.340 , pp. 1047-1048
    • McGuire, A.L.1    Joffe, S.2    Koenig, B.A.3
  • 30
    • 84894265494 scopus 로고    scopus 로고
    • Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U.S. preventive services task force recommendation statement
    • V.A.Moyer,, United States Preventive Services Task Force. 2014. Risk assessment, genetic counseling, and genetic testing for BRCA-related cancer in women: U.S. preventive services task force recommendation statement. Annals of Internal Medicine 160(4): 271–281.
    • (2014) Annals of Internal Medicine , vol.160 , Issue.4 , pp. 271-281
    • Moyer, V.A.1
  • 33
    • 84938545777 scopus 로고    scopus 로고
    • November
    • National Society of Genetic Counselors. 2006. NSGC code of ethics, Section II. Available at: http://nsgc.org/p/cm/ld/fid=12 (accessed November26, 2014).
    • (2006) NSGC code of ethics, Section II
  • 34
    • 84904749792 scopus 로고    scopus 로고
    • Genetic testing and familial implications in breast-ovarian cancer families
    • J.C.Oosterwijk,, J.de Vries, M.Mourits, et al. 2014. Genetic testing and familial implications in breast-ovarian cancer families. Maturitas 78(4):252–257.
    • (2014) Maturitas , vol.78 , Issue.4 , pp. 252-257
    • Oosterwijk, J.C.1    de Vries, J.2    Mourits, M.3
  • 38
    • 67149123340 scopus 로고    scopus 로고
    • Washington, DC: President's Council on Bioethics
    • President's Council on Bioethics. 2008. The changing moral focus of newborn screening. Washington, DC: President's Council on Bioethics.
    • (2008) The changing moral focus of newborn screening
  • 39
    • 0031994762 scopus 로고    scopus 로고
    • Genetic links, family ties, and social bonds: Rights and responsibilities in the face of genetic knowledge
    • R.Rhodes, 1998. Genetic links, family ties, and social bonds: Rights and responsibilities in the face of genetic knowledge. Journal of Medicine and Philosophy 23(1): 10–30.
    • (1998) Journal of Medicine and Philosophy , vol.23 , Issue.1 , pp. 10-30
    • Rhodes, R.1
  • 40
    • 84880411296 scopus 로고    scopus 로고
    • Mandatory extended searches in all genome sequencing: “Incidental findings,” patient autonomy, and shared decision making
    • L.F.Ross,, M.A.Rothstein, and E.W.Clayton. 2013. Mandatory extended searches in all genome sequencing: “Incidental findings,” patient autonomy, and shared decision making. Journal of the American Medical Association 310(4): 367–368.
    • (2013) Journal of the American Medical Association , vol.310 , Issue.4 , pp. 367-368
    • Ross, L.F.1    Rothstein, M.A.2    Clayton, E.W.3
  • 41
    • 84875377736 scopus 로고    scopus 로고
    • GINA's beauty is only skin deep
    • M.A.Rothstein, 2009. GINA's beauty is only skin deep. GeneWatch 22(2): 9–12.
    • (2009) GeneWatch , vol.22 , Issue.2 , pp. 9-12
    • Rothstein, M.A.1
  • 42
    • 84863998757 scopus 로고    scopus 로고
    • Access to sensitive information in segmented electronic health records
    • M.A.Rothstein, 2012. Access to sensitive information in segmented electronic health records, Journal of Law Medicine & Ethics 40(2): 394–400.
    • (2012) Journal of Law Medicine & Ethics , vol.40 , Issue.2 , pp. 394-400
    • Rothstein, M.A.1
  • 43
    • 84876963965 scopus 로고    scopus 로고
    • Communicating inherited genetic risk between parent and child: A meta-thematic synthesis
    • E.Rowland,, and A.Metcalf. 2013. Communicating inherited genetic risk between parent and child: A meta-thematic synthesis. International Journal of Nursing Studies 50(6): 870–80.
    • (2013) International Journal of Nursing Studies , vol.50 , Issue.6 , pp. 870-880
    • Rowland, E.1    Metcalf, A.2
  • 44
    • 84938495159 scopus 로고
    • 105 N.E. 92 (N.Y.)
    • Schloendorff v. Soc'y N.Y. Hosp. 1914. 105 N.E. 92 (N.Y.).
    • (1914)
  • 46
    • 40649085544 scopus 로고    scopus 로고
    • Geographic variation in informed consent law: Two standards for disclosure of treatment risks
    • D.M.Studdert,, M.M.Mello,, M.K.Levy,, et al. 2007. Geographic variation in informed consent law: Two standards for disclosure of treatment risks. Journal of Empirical Legal Studies 4: 103–124.
    • (2007) Journal of Empirical Legal Studies , vol.4 , pp. 103-124
    • Studdert, D.M.1    Mello, M.M.2    Levy, M.K.3
  • 47
    • 84901941440 scopus 로고    scopus 로고
    • Predictors of genetic testing decisions: A systematic review and critique of the literature
    • K.Sweeny,, A.Ghane, A.M.Legg, et al. 2014. Predictors of genetic testing decisions: A systematic review and critique of the literature. Journal of Genetic Counseling 23(3): 263–288.
    • (2014) Journal of Genetic Counseling , vol.23 , Issue.3 , pp. 263-288
    • Sweeny, K.1    Ghane, A.2    Legg, A.M.3
  • 48
    • 84938530618 scopus 로고    scopus 로고
    • Universal declaration of human genome and human rights: Article 5(c)
    • Resolution 16 adopted by the General Conference at its 29th Session, at 43
    • U.N. Educational, Scientific and Cultural Organization. 1997. Universal declaration of human genome and human rights: Article 5(c), Resolution 16 adopted by the General Conference at its 29th Session. Records of the General Conference, vol. 1, at 43. Available at: http://unesdoc.unesco.org/images/0011/001102/110220E.pdf
    • (1997) Records of the General Conference , vol.1
  • 49
    • 18444409981 scopus 로고    scopus 로고
    • Genetic testing and the family
    • M.Van Riper, 2005. Genetic testing and the family. Journal of Midwifery & Women's Health 50(3): 227–233. http://dx.doi.org/10.1016/j.jmwh.2005.02.008.
    • (2005) Journal of Midwifery & Women's Health , vol.50 , Issue.3 , pp. 227-233
    • Van Riper, M.1
  • 50
    • 84935697006 scopus 로고    scopus 로고
    • Genomics and the family: Integrative frameworks
    • Tercyak K.P., (ed), New York, NY: Springer
    • M.Van Riper, 2010. Genomics and the family: Integrative frameworks. In Handbook of genomics and the family, ed. K.P.Tercyak, 109–139. New York, NY: Springer.
    • (2010) Handbook of genomics and the family , pp. 109-139
    • Van Riper, M.1
  • 52
    • 84887441653 scopus 로고    scopus 로고
    • Genetic incidental findings: Autonomy regained
    • E.Vayena,, and J.Tasioulas. 2013. Genetic incidental findings: Autonomy regained. Genetics in Medicine 15(11): 868–870. http://dx.doi.org/10.1038/gim.2013.104.
    • (2013) Genetics in Medicine , vol.15 , Issue.11 , pp. 868-870
    • Vayena, E.1    Tasioulas, J.2
  • 53
    • 79960480384 scopus 로고    scopus 로고
    • Predisease: When does it make sense
    • A.J.Viera, 2011. Predisease: When does it make sense? Epidemiologic Reviews 33: 122–134. http://dx.doi.org/10.1093/epirev/mxr002.
    • (2011) Epidemiologic Reviews , vol.33 , pp. 122-134
    • Viera, A.J.1
  • 54
    • 0027143872 scopus 로고
    • National policy development for the clinical application of genetic diagnostic technologies: Lessons from cystic fibrosis
    • B.S.Wilfond,, and K.Nolan. 1993. National policy development for the clinical application of genetic diagnostic technologies: Lessons from cystic fibrosis. Journal of the American Medical Association 270(24): 2948–2954. http://dx.doi.org/10.1001/jama.1993.03510240060033.
    • (1993) Journal of the American Medical Association , vol.270 , Issue.24 , pp. 2948-2954
    • Wilfond, B.S.1    Nolan, K.2
  • 55
    • 78650191384 scopus 로고    scopus 로고
    • Communicating genetic risk information within families: A review
    • M.Wiseman,, C.Dancyger, and S.Michie. 2010. Communicating genetic risk information within families: A review. Familial Cancer 9(4): 691–703. http://dx.doi.org/10.1007/s10689-010-9380-3.
    • (2010) Familial Cancer , vol.9 , Issue.4 , pp. 691-703
    • Wiseman, M.1    Dancyger, C.2    Michie, S.3
  • 56
    • 44949211505 scopus 로고    scopus 로고
    • Managing incidental findings in human subjects research: Analysis and recommendations
    • S.M.Wolf,, F.P.Lawrenz, C.A.Nelson, et al. 2008. Managing incidental findings in human subjects research: Analysis and recommendations. Journal of Law, Medicine & Ethics 36(2): 219–248. http://dx.doi.org/10.1111/j.1748-720X.2008.00266.x.
    • (2008) Journal of Law, Medicine & Ethics , vol.36 , Issue.2 , pp. 219-248
    • Wolf, S.M.1    Lawrenz, F.P.2    Nelson, C.A.3
  • 57
    • 84878364688 scopus 로고    scopus 로고
    • Patient autonomy and incidental findings in clinical genomics
    • S.M.Wolf,, G.J.Annas, and S.Elias. 2013. Patient autonomy and incidental findings in clinical genomics. Science 340: 1049–1050. http://dx.doi.org/10.1126/science.1239119.
    • (2013) Science , vol.340 , pp. 1049-1050
    • Wolf, S.M.1    Annas, G.J.2    Elias, S.3
  • 58
    • 84928829078 scopus 로고    scopus 로고
    • Familial hypercholesterolemia
    • November
    • E.Youngblom,, and J.W.Knowles, 2014. Familial hypercholesterolemia, GeneReviews. Available at: http://www.ncbi.nlm.nih.gov/books/NBK174884/ (accessed November26, 2014).
    • (2014) GeneReviews
    • Youngblom, E.1    Knowles, J.W.2


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