This paper summarizes the current controversies surrounding the identification and disclosure of “incidental” or “secondary” findings from genomic sequencing and the implications for genetic counseling practice. The rapid expansion of clinical sequencing has influenced the ascertainment and return of incidental findings, while empiric data to inform best practices are still being generated. Using the North Carolina Clinical Genomic Evaluation by Next Generation Exome Sequencing (NCGENES) research project as an example, we discuss the implications of different models of consent and their impact on patient decisions.
机构:
Geisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Coriell Inst Med Res, 403 Haddon Ave, Camden, NJ 08103 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Schmidlen, Tara
Sturm, Amy C.
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Geisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Ohio State Univ, Div Human Genet, Wexner Med Ctr, 2012 Kenny Rd, Columbus, OH 43221 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Sturm, Amy C.
Hovick, Shelly
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Ohio State Univ, Sch Commun, Columbus, OH 43214 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Hovick, Shelly
Scheinfeldt, Laura
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Coriell Inst Med Res, 403 Haddon Ave, Camden, NJ 08103 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Scheinfeldt, Laura
Roberts, J. Scott
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Univ Michigan, Sch Publ Hlth, Dept Hlth Behav & Hlth Educ, Ann Arbor, MI 48109 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Roberts, J. Scott
Morr, Lindsey
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Ohio State Univ, Sch Commun, Columbus, OH 43214 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Morr, Lindsey
McElroy, Joseph
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Ctr Biostat, Dept Biomed Informat, Columbus, OH 43221 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
McElroy, Joseph
Toland, Amanda E.
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机构:
Ohio State Univ, Div Human Genet, Wexner Med Ctr, 2012 Kenny Rd, Columbus, OH 43221 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Toland, Amanda E.
Christman, Michael
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Coriell Inst Med Res, 403 Haddon Ave, Camden, NJ 08103 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Christman, Michael
O'Daniel, Julianne M.
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Univ N Carolina, Dept Genet, Chapel Hill, NC 27515 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
O'Daniel, Julianne M.
Gordon, Erynn S.
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Coriell Inst Med Res, 403 Haddon Ave, Camden, NJ 08103 USA
Genome Med, Monterey, CA 93940 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Gordon, Erynn S.
Bernhardt, Barbara A.
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Univ Penn, Div Translat Med & Human Genet, Perelman Sch Med, Philadelphia, PA 19104 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Bernhardt, Barbara A.
Ormond, Kelly E.
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Stanford Univ, Dept Genet, Sch Med, Stanford, CA 94305 USA
Stanford Univ, Stanford Ctr Biomed Eth, Sch Med, Stanford, CA 94305 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA
Ormond, Kelly E.
Sweet, Kevin
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Ohio State Univ, Div Human Genet, Wexner Med Ctr, 2012 Kenny Rd, Columbus, OH 43221 USAGeisinger Hlth Syst, Genom Med Inst, Danville, PA USA