메뉴 건너뛰기




Volumn 7, Issue 2, 2016, Pages 145-152

Was it worth it? Patients’ perspectives on the perceived value of genomic-based individualized medicine

Author keywords

Clinical utility; Genomic sequencing; Patient views; Precision medicine

Indexed keywords

ADULT; AGED; ALTRUISM; ARTICLE; CLINICAL ARTICLE; CLINICAL EFFECTIVENESS; DIAGNOSTIC VALUE; FEMALE; FOLLOW UP; GENE MUTATION; GENE SEQUENCE; GENETIC IDENTIFICATION; GENOMICS; HUMAN; INFORMED CONSENT; MALE; MALIGNANT NEOPLASTIC DISEASE; MEDICAL RESEARCH; ONCOLOGY; PATIENT ADVOCACY; PATIENT ATTITUDE; PATIENT DECISION MAKING; PERSONALIZED MEDICINE; PRIORITY JOURNAL; RARE DISEASE; SEMI STRUCTURED INTERVIEW;

EID: 84957695802     PISSN: 1868310X     EISSN: 18686001     Source Type: Journal    
DOI: 10.1007/s12687-016-0260-x     Document Type: Article
Times cited : (41)

References (45)
  • 1
    • 84879601453 scopus 로고    scopus 로고
    • Return of incidental findings in genomic medicine: measuring what patients value—development of an instrument to measure preferences for information from next-generation testing (IMPRINT)
    • PID: 23722871
    • Bennette CS, Trinidad SB, Fullerton S, Patrick D, Amendola L, Burke W, Hisama F, Jarvik G, Regier D, Veenstra D (2013) Return of incidental findings in genomic medicine: measuring what patients value—development of an instrument to measure preferences for information from next-generation testing (IMPRINT). Genet Med 15:873–881
    • (2013) Genet Med , vol.15 , pp. 873-881
    • Bennette, C.S.1    Trinidad, S.B.2    Fullerton, S.3    Patrick, D.4    Amendola, L.5    Burke, W.6    Hisama, F.7    Jarvik, G.8    Regier, D.9    Veenstra, D.10
  • 2
    • 79959276553 scopus 로고    scopus 로고
    • Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time
    • PID: 21558861
    • Berg JS, Khoury MJ, Evans JP (2011) Deploying whole genome sequencing in clinical practice and public health: meeting the challenge one bin at a time. Genet Med 13(6):499–504. doi:10.1097/GIM.0b013e318220aaba
    • (2011) Genet Med , vol.13 , Issue.6 , pp. 499-504
    • Berg, J.S.1    Khoury, M.J.2    Evans, J.P.3
  • 3
    • 77955628265 scopus 로고    scopus 로고
    • Offering individual genetic research results: context matters
    • Beskow Laura M, Wylie B (2010) “Offering individual genetic research results: context matters.”. Sci Transl Med 2(38):38c20
    • (2010) Sci Transl Med , vol.2 , Issue.38 , pp. 38c20
    • Beskow Laura, M.1    Wylie, B.2
  • 4
    • 73349095356 scopus 로고    scopus 로고
    • Points to consider: the research ethics consultation service and the IRB
    • PID: 20034184
    • Beskow LM, Grady C, Iltis AS, Sadler JZ, Wilfond BS (2009) Points to consider: the research ethics consultation service and the IRB. IRB 31(6):1–9
    • (2009) IRB , vol.31 , Issue.6 , pp. 1-9
    • Beskow, L.M.1    Grady, C.2    Iltis, A.S.3    Sadler, J.Z.4    Wilfond, B.S.5
  • 5
    • 84902578876 scopus 로고    scopus 로고
    • Diagnostic clinical genome and exome sequencing
    • PID: 24941179
    • Biesecker LG, Green RC (2014) Diagnostic clinical genome and exome sequencing. N Engl J Med 370(25):2418–25. doi:10.1056/NEJMra1312543
    • (2014) N Engl J Med , vol.370 , Issue.25 , pp. 2418-2425
    • Biesecker, L.G.1    Green, R.C.2
  • 6
    • 84876926289 scopus 로고    scopus 로고
    • Attitudes about regulation among direct-to-consumer genetic testing customers
    • PID: 23560882
    • Bollinger JM, Green RC, Kaufman D (2013) Attitudes about regulation among direct-to-consumer genetic testing customers. Genet Test Mol Biomarkers 17(5):424–28. doi:10.1089/gtmb.2012.0453
    • (2013) Genet Test Mol Biomarkers , vol.17 , Issue.5 , pp. 424-428
    • Bollinger, J.M.1    Green, R.C.2    Kaufman, D.3
  • 8
    • 0029016142 scopus 로고
    • Qualitative research: qualitative interviews in medical research
    • COI: 1:STN:280:DyaK2MzltlWgsQ%3D%3D, PID: 7627048
    • Britten N (1995) Qualitative research: qualitative interviews in medical research. BMJ 311(6999):251–53. doi:10.1136/bmj.311.6999.251
    • (1995) BMJ , vol.311 , Issue.6999 , pp. 251-253
    • Britten, N.1
  • 10
    • 84924428225 scopus 로고    scopus 로고
    • Insurance companies are slow to cover next-generation sequencing
    • COI: 1:CAS:528:DC%2BC2MXjvVGjsLo%3D, PID: 25742448
    • Chakradhar S (2015) Insurance companies are slow to cover next-generation sequencing. Nat Med 21(3):204–5. doi:10.1038/nm0315-204
    • (2015) Nat Med , vol.21 , Issue.3 , pp. 204-205
    • Chakradhar, S.1
  • 12
    • 77951869318 scopus 로고    scopus 로고
    • Personalized medicine and genomics: challenges and opportunities in assessing effectiveness, cost-effectiveness, and future research priorities
    • Conti R, Veenstra DL, Armstrong K, Lesko LJ, Grosse SD (2010) Personalized medicine and genomics: challenges and opportunities in assessing effectiveness, cost-effectiveness, and future research priorities. Med Decis Mak Int J Soc Med Decis Mak 30(3):328–40. doi:10.1177/0272989X09347014
    • (2010) Med Decis Mak Int J Soc Med Decis Mak , vol.30 , Issue.3 , pp. 328-340
    • Conti, R.1    Veenstra, D.L.2    Armstrong, K.3    Lesko, L.J.4    Grosse, S.D.5
  • 16
    • 69549083158 scopus 로고    scopus 로고
    • Evaluating the utility of personal genomic information
    • COI: 1:STN:280:DC%2BD1Mrlt1Gqsg%3D%3D
    • Foster Morris W, John Mulvihill J, Richard Sharp R (2009) Evaluating the utility of personal genomic information. Genet Med Off J Am Coll Med Genet 11(8):570–74. doi:10.1097/GIM.0b013e3181a2743e
    • (2009) Genet Med Off J Am Coll Med Genet , vol.11 , Issue.8 , pp. 570-574
    • Foster Morris, W.1    John Mulvihill, J.2    Richard Sharp, R.3
  • 17
    • 84928621753 scopus 로고    scopus 로고
    • Public perceptions of disease severity but not actionability correlate with interest in receiving genomic results: nonalignment with current trends in practice
    • PID: 25790929
    • Graves KD, Sinicrope PS, McCormick JB, Zhou Y, Vadaparampil ST, Lindor NM (2015) Public perceptions of disease severity but not actionability correlate with interest in receiving genomic results: nonalignment with current trends in practice. Public Health Genomics 18(3):173–83. doi:10.1159/000375479
    • (2015) Public Health Genomics , vol.18 , Issue.3 , pp. 173-183
    • Graves, K.D.1    Sinicrope, P.S.2    McCormick, J.B.3    Zhou, Y.4    Vadaparampil, S.T.5    Lindor, N.M.6
  • 19
    • 79952052294 scopus 로고    scopus 로고
    • Evaluation of the validity and utility of genetic testing for rare diseases
    • PID: 20824443
    • Grosse SD, Kalman L, Khoury MJ (2010) Evaluation of the validity and utility of genetic testing for rare diseases. Adv Exp Med Biol 686:115–31. doi:10.1007/978-90-481-9485-8_8
    • (2010) Adv Exp Med Biol , vol.686 , pp. 115-131
    • Grosse, S.D.1    Kalman, L.2    Khoury, M.J.3
  • 22
    • 84864540398 scopus 로고    scopus 로고
    • Appealing to altruism is not enough: motivators for participating in health services research
    • PID: 22850146
    • Hunter J, Corcoran K, Leeder S, Phelps K (2012) Appealing to altruism is not enough: motivators for participating in health services research. J Empir Res Hum Res Ethics: JERHRE 7(3):84–90. doi:10.1525/jer.2012.7.3.84
    • (2012) J Empir Res Hum Res Ethics: JERHRE , vol.7 , Issue.3 , pp. 84-90
    • Hunter, J.1    Corcoran, K.2    Leeder, S.3    Phelps, K.4
  • 24
    • 84902271056 scopus 로고    scopus 로고
    • Return of genomic results to research participants: the floor, the ceiling, and the choices in between
    • COI: 1:CAS:528:DC%2BC2cXnslGnsLk%3D, PID: 24814192
    • Jarvik GP, Amendola LM, Berg JS, Brothers K, Clayton EW, Chung W, Barbara Evans J et al (2014) Return of genomic results to research participants: the floor, the ceiling, and the choices in between. Am J Hum Genet 94(6):818–26. doi:10.1016/j.ajhg.2014.04.009
    • (2014) Am J Hum Genet , vol.94 , Issue.6 , pp. 818-826
    • Jarvik, G.P.1    Amendola, L.M.2    Berg, J.S.3    Brothers, K.4    Clayton, E.W.5    Chung, W.6    Barbara Evans, J.7
  • 25
    • 84863619019 scopus 로고    scopus 로고
    • Risky business: risk perception and the use of medical services among customers of DTC personal genetic testing
    • PID: 22278220
    • Kaufman DJ, Bollinger JM, Dvoskin RL, Scott JA (2012) Risky business: risk perception and the use of medical services among customers of DTC personal genetic testing. J Genet Couns 21(3):413–22. doi:10.1007/s10897-012-9483-0
    • (2012) J Genet Couns , vol.21 , Issue.3 , pp. 413-422
    • Kaufman, D.J.1    Bollinger, J.M.2    Dvoskin, R.L.3    Scott, J.A.4
  • 27
    • 84055217086 scopus 로고    scopus 로고
    • Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility
    • Kopits IM, Chen C, Roberts JS, Uhlmann W, Green RC (2011) Willingness to pay for genetic testing for Alzheimer's disease: a measure of personal utility. Genet Test Mol Biomarker 15(12):871–875
    • (2011) Genet Test Mol Biomarker , vol.15 , Issue.12 , pp. 871-875
    • Kopits, I.M.1    Chen, C.2    Roberts, J.S.3    Uhlmann, W.4    Green, R.C.5
  • 30
    • 84869503937 scopus 로고    scopus 로고
    • Altruism and participation in longitudinal health research? Insights from the Whitehall II Study
    • Mein G, Seale C, Rice H, Johal S, Ashcroft RE, Ellison G, Tinker A (2012) Altruism and participation in longitudinal health research? Insights from the Whitehall II Study. Soc Sci Med (1982) 75(12):2345–52. doi:10.1016/j.socscimed.2012.09.006
    • (2012) Soc Sci Med (1982) , vol.75 , Issue.12 , pp. 2345-2352
    • Mein, G.1    Seale, C.2    Rice, H.3    Johal, S.4    Ashcroft, R.E.5    Ellison, G.6    Tinker, A.7
  • 32
    • 84927178518 scopus 로고    scopus 로고
    • Genetics: clinical exome sequencing in neurology practice
    • PID: 25366112
    • Miyatake S, Matsumoto N (2014) Genetics: clinical exome sequencing in neurology practice. Nat Rev Neurol 10(12):676–78. doi:10.1038/nrneurol.2014.213
    • (2014) Nat Rev Neurol , vol.10 , Issue.12 , pp. 676-678
    • Miyatake, S.1    Matsumoto, N.2
  • 34
    • 84884170973 scopus 로고    scopus 로고
    • Reflections on market access for personalized medicine: recommendations for Europe
    • PID: 24034310
    • Payne K, Annemans L (2013) Reflections on market access for personalized medicine: recommendations for Europe. Value Health 16:S32–S38
    • (2013) Value Health , vol.16 , pp. S32-S38
    • Payne, K.1    Annemans, L.2
  • 35
    • 78650589643 scopus 로고    scopus 로고
    • What is value in health care?
    • COI: 1:CAS:528:DC%2BC3cXhs1Whs7nK, PID: 21142528
    • Porter ME (2010) What is value in health care? N Engl J Med 363(26):2477–81. doi:10.1056/NEJMp1011024
    • (2010) N Engl J Med , vol.363 , Issue.26 , pp. 2477-2481
    • Porter, M.E.1
  • 36
    • 33750631748 scopus 로고    scopus 로고
    • Disclosing individual genetic results to research participants
    • Ravitsky V, Wilfond BS (2006) Disclosing individual genetic results to research participants. Am J Bioethics: AJOB 6(6):8–17. doi:10.1080/15265160600934772
    • (2006) Am J Bioethics: AJOB , vol.6 , Issue.6 , pp. 8-17
    • Ravitsky, V.1    Wilfond, B.S.2
  • 37
    • 84886730124 scopus 로고    scopus 로고
    • Genetic susceptibility testing for neurodegenerative diseases: ethical and practice issues
    • PID: 23583530
    • Roberts JS, Uhlmann WR (2013) Genetic susceptibility testing for neurodegenerative diseases: ethical and practice issues. Prog Neurobiol 110:89–101
    • (2013) Prog Neurobiol , vol.110 , pp. 89-101
    • Roberts, J.S.1    Uhlmann, W.R.2
  • 38
    • 67649732906 scopus 로고    scopus 로고
    • Challenges of translating genetic tests into clinical and public health practice
    • COI: 1:CAS:528:DC%2BD1MXnsVWgt7c%3D, PID: 19506575
    • Rogowski WH, Grosse SD, Khoury MJ (2009) Challenges of translating genetic tests into clinical and public health practice. Nat Rev Genet 10(7):489–95. doi:10.1038/nrg2606
    • (2009) Nat Rev Genet , vol.10 , Issue.7 , pp. 489-495
    • Rogowski, W.H.1    Grosse, S.D.2    Khoury, M.J.3
  • 40
    • 26844559961 scopus 로고    scopus 로고
    • How can the evaluation of genetic tests be enhanced? Lessons learned from the ACCE framework and evaluating genetic tests in the United Kingdom
    • PID: 16170241
    • Sanderson S, Zimmern R, Kroese M, Higgins J, Patch C, Emery J (2005) How can the evaluation of genetic tests be enhanced? Lessons learned from the ACCE framework and evaluating genetic tests in the United Kingdom. Genet Med 7(7):495–500. doi:10.1097/01.gim.0000179941.44494.73
    • (2005) Genet Med , vol.7 , Issue.7 , pp. 495-500
    • Sanderson, S.1    Zimmern, R.2    Kroese, M.3    Higgins, J.4    Patch, C.5    Emery, J.6
  • 42
    • 84872062684 scopus 로고    scopus 로고
    • Improving the efficiency and relevance of evidence-based recommendations in the era of whole-genome sequencing: an EGAPP methods update
    • Veenstra DL, Piper M, Haddow JE, Pauker SG, Klein R, Richards CS, Sean Tunis R et al (2013) Improving the efficiency and relevance of evidence-based recommendations in the era of whole-genome sequencing: an EGAPP methods update. Genet Med Off J Am Coll Med Genet 15(1):14–24. doi:10.1038/gim.2012.106
    • (2013) Genet Med Off J Am Coll Med Genet , vol.15 , Issue.1 , pp. 14-24
    • Veenstra, D.L.1    Piper, M.2    Haddow, J.E.3    Pauker, S.G.4    Klein, R.5    Richards, C.S.6    Sean Tunis, R.7
  • 43
    • 84858857227 scopus 로고    scopus 로고
    • Primary care patients’ views, attitudes, and decision-making factors regarding direct-to-consumer personal genome testing: results from a qualitative study
    • Wasson K, Hogan NS, Sanders TN, Helzlsouer KJ (2012) Primary care patients’ views, attitudes, and decision-making factors regarding direct-to-consumer personal genome testing: results from a qualitative study. AJOB Prim Res 3(2):24–35. doi:10.1080/21507716.2011.650344
    • (2012) AJOB Prim Res , vol.3 , Issue.2 , pp. 24-35
    • Wasson, K.1    Hogan, N.S.2    Sanders, T.N.3    Helzlsouer, K.J.4
  • 44
    • 84918771753 scopus 로고    scopus 로고
    • Molecular findings among patients referred for clinical whole-exome sequencing
    • COI: 1:CAS:528:DC%2BC2MXisFWqsb4%3D, PID: 25326635
    • Yang Y, Muzny DM, Xia F et al (2014) Molecular findings among patients referred for clinical whole-exome sequencing. JAMA 312(18):1870–79. doi:10.1001/jama.2014.14601
    • (2014) JAMA , vol.312 , Issue.18 , pp. 1870-1879
    • Yang, Y.1    Muzny, D.M.2    Xia, F.3
  • 45
    • 84904034852 scopus 로고    scopus 로고
    • Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing
    • COI: 1:CAS:528:DC%2BC2cXhtVKhtb7P, PID: 24975944
    • Yu J-H, Harrell TM, Jamal SM, Tabor HK, Bamshad MJ (2014) Attitudes of genetics professionals toward the return of incidental results from exome and whole-genome sequencing. Am J Hum Genet 95(1):77–84. doi:10.1016/j.ajhg.2014.06.004
    • (2014) Am J Hum Genet , vol.95 , Issue.1 , pp. 77-84
    • Yu, J.-H.1    Harrell, T.M.2    Jamal, S.M.3    Tabor, H.K.4    Bamshad, M.J.5


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.