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Volumn 17, Issue 12, 2015, Pages 949-957

Stakeholder engagement in policy development: Challenges and opportunities for human genomics

Author keywords

genomics; key stakeholders; policy; policy making; stakeholder engagement

Indexed keywords

GENOMICS; HUMAN; MANAGEMENT; NEWBORN; NEWBORN SCREENING; ORGANIZATION; PUBLIC HEALTH; VOICE; LEGISLATION AND JURISPRUDENCE; ORGANIZATION AND MANAGEMENT; PATIENT PARTICIPATION; PUBLIC RELATIONS; STANDARDS;

EID: 84949236064     PISSN: 10983600     EISSN: 15300366     Source Type: Journal    
DOI: 10.1038/gim.2015.8     Document Type: Review
Times cited : (79)

References (53)
  • 2
    • 68149169848 scopus 로고    scopus 로고
    • Developing stakeholder involvement for introducing public health genomics into public policy
    • Burton H, Adams M, Bunton R, Schröder-Bäck P. Developing stakeholder involvement for introducing public health genomics into public policy. Public Health Genomics 2009;12:11-19.
    • (2009) Public Health Genomics , vol.12 , pp. 11-19
    • Burton, H.1    Adams, M.2    Bunton, R.3    Schröder-Bäck, P.4
  • 3
    • 84881396146 scopus 로고    scopus 로고
    • Deal done over HeLa cell line
    • Callaway E. Deal done over HeLa cell line. Nature 2013;500:132-133.
    • (2013) Nature , vol.500 , pp. 132-133
    • Callaway, E.1
  • 4
    • 59249098843 scopus 로고    scopus 로고
    • Why guideline-making requires reform
    • Sniderman AD, Furberg CD. Why guideline-making requires reform. JAMA 2009;301:429-431.
    • (2009) JAMA , vol.301 , pp. 429-431
    • Sniderman, A.D.1    Furberg, C.D.2
  • 5
    • 84878557862 scopus 로고    scopus 로고
    • Don't just invite us to the table: Authentic community engagement
    • Terry SF. Don't just invite us to the table: authentic community engagement. Genet Test Mol Biomarkers 2013;17:443-445.
    • (2013) Genet Test Mol Biomarkers , vol.17 , pp. 443-445
    • Terry, S.F.1
  • 6
    • 84876903686 scopus 로고    scopus 로고
    • Nothing about us without us: Guidelines for genetic testing
    • Terry SF, Bonhomme N. Nothing about us without us: guidelines for genetic testing. Genet Test Mol Biomarkers 2013;17:357-358.
    • (2013) Genet Test Mol Biomarkers , vol.17 , pp. 357-358
    • Terry, S.F.1    Bonhomme, N.2
  • 7
    • 84857812099 scopus 로고    scopus 로고
    • Shared decision making-pinnacle of patientcentered care
    • Barry MJ, Edgman-Levitan S. Shared decision making-pinnacle of patientcentered care. N Engl J Med 2012;366:780-781.
    • (2012) N Engl J Med , vol.366 , pp. 780-781
    • Barry, M.J.1    Edgman-Levitan, S.2
  • 8
    • 84874776617 scopus 로고    scopus 로고
    • Patient and family engagement: A framework for understanding the elements and developing interventions and policies
    • Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood) 2013;32:223-231.
    • (2013) Health Aff (Millwood) , vol.32 , pp. 223-231
    • Carman, K.L.1    Dardess, P.2    Maurer, M.3
  • 9
    • 84874773412 scopus 로고    scopus 로고
    • How the Patient-Centered Outcomes Research Institute is engaging patients and others in shaping its research agenda
    • Fleurence R, Selby JV, Odom-Walker K, et al. How the Patient-Centered Outcomes Research Institute is engaging patients and others in shaping its research agenda. Health Aff (Millwood) 2013;32:393-400.
    • (2013) Health Aff (Millwood) , vol.32 , pp. 393-400
    • Fleurence, R.1    Selby, J.V.2    Odom-Walker, K.3
  • 10
    • 79952118534 scopus 로고    scopus 로고
    • How best to engage patients, doctors, and other stakeholders in designing comparative effectiveness studies
    • Hoffman A, Montgomery R, Aubry W, Tunis SR. How best to engage patients, doctors, and other stakeholders in designing comparative effectiveness studies. Health Aff (Millwood) 2010;29:1834-1841.
    • (2010) Health Aff (Millwood) , vol.29 , pp. 1834-1841
    • Hoffman, A.1    Montgomery, R.2    Aubry, W.3    Tunis, S.R.4
  • 11
    • 47849087483 scopus 로고    scopus 로고
    • The next step in guideline development: Incorporating patient preferences
    • Krahn M, Naglie G. The next step in guideline development: incorporating patient preferences. JAMA 2008;300:436-438.
    • (2008) JAMA , vol.300 , pp. 436-438
    • Krahn, M.1    Naglie, G.2
  • 14
    • 84879370418 scopus 로고    scopus 로고
    • CTSA Community Engagement Key Function Committee Task Force on the Principles of Community Engagement Department of Health and Human Services. National Institutes of Health: Bethesda MD
    • CTSA Community Engagement Key Function Committee Task Force on the Principles of Community Engagement. Principles of Community Engagement. 2nd edition. Department of Health and Human Services. National Institutes of Health: Bethesda, MD, 2011.
    • (2011) Principles of Community Engagement. 2nd Edition
  • 15
    • 84949287097 scopus 로고    scopus 로고
    • International Association for Public Participation (IAP2). IAP2's Public Participation Toolbox Accessed 6 March 2014
    • International Association for Public Participation (IAP2). IAP2's Public Participation Toolbox. 2006. http://c.ymcdn.com/sites/www.iap2.org/resource/resmgr/imported/06Dec-Toolbox.pdf. Accessed 6 March, 2014.
    • (2006)
  • 16
    • 84881319270 scopus 로고    scopus 로고
    • What does it mean to be genomically literate: National Human Genome Research Institute Meeting Report
    • Hurle B, Citrin T, Jenkins JF, et al. What does it mean to be genomically literate: National Human Genome Research Institute Meeting Report. Genet Med 2013;15:658-663.
    • (2013) Genet Med , vol.15 , pp. 658-663
    • Hurle, B.1    Citrin, T.2    Jenkins, J.F.3
  • 17
    • 84883243445 scopus 로고    scopus 로고
    • Explosives, genomics, and the environment: Conducting public deliberation on topics of complex science and social controversy
    • O'Doherty KC, MacKenzie MK, Badulescu D, Burgess MM. Explosives, genomics, and the environment: conducting public deliberation on topics of complex science and social controversy. SAGE Open 2013;3:1-17.
    • (2013) SAGE Open , vol.3 , pp. 1-17
    • O'Doherty, K.C.1    MacKenzie, M.K.2    Badulescu, D.3    Burgess, M.M.4
  • 19
    • 77954655906 scopus 로고    scopus 로고
    • The Havasupai Indian tribe case-lessons for research involving stored biologic samples
    • Mello MM, Wolf LE. The Havasupai Indian tribe case-lessons for research involving stored biologic samples. N Engl J Med 2010;363:204-207.
    • (2010) N Engl J Med , vol.363 , pp. 204-207
    • Mello, M.M.1    Wolf, L.E.2
  • 20
    • 81255181691 scopus 로고    scopus 로고
    • Texas Tribune Accessed 6 March, 2014
    • Ramshaw E. DSHS turned over hundreds of DNA samples to Feds. Texas Tribune. 2010. http://www.texastribune.org/2010/02/22/dshs-turned-over-hundredsof-dna-samples-to-feds/. Accessed 6 March, 2014.
    • (2010) DSHS Turned over Hundreds of DNA Samples to Feds
    • Ramshaw, E.1
  • 21
    • 79960421226 scopus 로고    scopus 로고
    • Newborn screening: A spot of trouble
    • Carmichael M. Newborn screening: a spot of trouble. Nature 2011;475: 156-158.
    • (2011) Nature , vol.475 , pp. 156-158
    • Carmichael, M.1
  • 22
    • 84949189711 scopus 로고    scopus 로고
    • Beleno v Texas Dept. of State Health Services, et al (US District Court for the Western District of Texas in San Antonio
    • Beleno v Texas Dept. of State Health Services, et al., Case No. 5:09-cv-00188 (US District Court for the Western District of Texas in San Antonio 2009).
    • (2009) Case 5: 09-cv-00188
  • 23
    • 84859413649 scopus 로고    scopus 로고
    • MN Supreme Court rules on newborn screening samples
    • MN Supreme Court rules on newborn screening samples. Minn Med 2011;94:18-19.
    • (2011) Minn Med , vol.94 , pp. 18-19
  • 24
    • 85014578820 scopus 로고    scopus 로고
    • NIH director explains HeLa agreement
    • Callaway E. NIH director explains HeLa agreement. Nature News 2013. http://www.nature.com/news/nih-director-explains-hela-agreement-1.13521.
    • (2013) Nature News
    • Callaway, E.1
  • 26
    • 78349253881 scopus 로고    scopus 로고
    • Analyzing public health policy: Three approaches
    • Coveney J. Analyzing public health policy: three approaches. Health Promot Pract 2010;11:515-521.
    • (2010) Health Promot Pract , vol.11 , pp. 515-521
    • Coveney, J.1
  • 28
    • 84872826516 scopus 로고    scopus 로고
    • Characterizing biobank organizations in the U.S.: Results from a national survey
    • Henderson GE, Cadigan RJ, Edwards TP, et al. Characterizing biobank organizations in the U.S.: results from a national survey. Genome Med 2013;5:3.
    • (2013) Genome Med , vol.5 , pp. 3
    • Henderson, G.E.1    Cadigan, R.J.2    Edwards, T.P.3
  • 29
    • 84900015671 scopus 로고    scopus 로고
    • Community engagement in US biobanking: Multiplicity of meaning and method
    • Haldeman KM, Cadigan RJ, Davis A, et al. Community engagement in US biobanking: multiplicity of meaning and method. Public Health Genomics 2014;17:84-94.
    • (2014) Public Health Genomics , vol.17 , pp. 84-94
    • Haldeman, K.M.1    Cadigan, R.J.2    Davis, A.3
  • 30
    • 33747591403 scopus 로고    scopus 로고
    • Newborn screening: Toward a uniform screening panel and system
    • American College of Medical Genetics and Genomics
    • American College of Medical Genetics and Genomics. Newborn screening: toward a uniform screening panel and system. Genet Med 2006;8(suppl 1):1S-252S.
    • (2006) Genet Med , vol.8 , pp. 1S-252S
  • 31
    • 0001373172 scopus 로고    scopus 로고
    • Serving the family from birth to the medical home. Newborn screening: A blueprint for the future-A call for a national agenda on state newborn screening programs
    • American Academy of Pediatrics
    • American Academy of Pediatrics. Serving the family from birth to the medical home. Newborn screening: a blueprint for the future-a call for a national agenda on state newborn screening programs. Pediatrics 2000;106(2 Pt 2):389-422.
    • (2000) Pediatrics , vol.106 , Issue.2 , pp. 389-422
  • 33
    • 79960841778 scopus 로고    scopus 로고
    • Committee report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening
    • Therrell BL Jr, Hannon WH, Bailey DB Jr, et al. Committee report: Considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening. Genet Med 2011;13:621-624.
    • (2011) Genet Med , vol.13 , pp. 621-624
    • Therrell, B.L.1    Hannon, W.H.2    Bailey, D.B.3
  • 34
    • 84920546044 scopus 로고    scopus 로고
    • Evidence synthesis and guideline development in genomic medicine: Current status and future prospects
    • Schully SD, Lam TK, Dotson WD, et al. Evidence synthesis and guideline development in genomic medicine: current status and future prospects. Genet Med 2015;17:63-67.
    • (2015) Genet Med , vol.17 , pp. 63-67
    • Schully, S.D.1    Lam, T.K.2    Dotson, W.D.3
  • 35
    • 84904034852 scopus 로고    scopus 로고
    • Attitudes of genetics professionals toward the return of incidental results from exome and wholegenome sequencing
    • Yu JH, Harrell TM, Jamal SM, Tabor HK, Bamshad MJ. Attitudes of genetics professionals toward the return of incidental results from exome and wholegenome sequencing. Am J Hum Genet 2014;95:77-84.
    • (2014) Am J Hum Genet , vol.95 , pp. 77-84
    • Yu, J.H.1    Harrell, T.M.2    Jamal, S.M.3    Tabor, H.K.4    Bamshad, M.J.5
  • 36
    • 84895813688 scopus 로고    scopus 로고
    • The EGAPP initiative: Lessons learned
    • Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Working Group
    • Evaluation of Genomic Applications in Practice and Prevention (EGAPP) Working Group. The EGAPP initiative: lessons learned. Genet Med 2014;16:217-224.
    • (2014) Genet Med , vol.16 , pp. 217-224
  • 37
    • 84887439425 scopus 로고    scopus 로고
    • Recommendations for returning genomic incidental findings We need to talk!
    • Burke W, Antommaria AH, Bennett R, et al. Recommendations for returning genomic incidental findings We need to talk! Genet Med 2013; 15:854-859.
    • (2013) Genet Med , vol.15 , pp. 854-859
    • Burke, W.1    Antommaria, A.H.2    Bennett, R.3
  • 38
    • 84880411296 scopus 로고    scopus 로고
    • Mandatory extended searches in all genome sequencing: Incidental findings patient autonomy, and shared decision making
    • Ross LF, Rothstein MA, Clayton EW. Mandatory extended searches in all genome sequencing: "incidental findings," patient autonomy, and shared decision making. JAMA 2013;310:367-368.
    • (2013) JAMA , vol.310 , pp. 367-368
    • Ross, L.F.1    Rothstein, M.A.2    Clayton, E.W.3
  • 39
  • 40
    • 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
    • Allyse M, Michie M. Not-so-incidental findings: the ACMG recommendations on the reporting of incidental findings in clinical whole genome and whole exome sequencing. Trends Biotechnol 2013;31:439-441.
    • (2013) Trends Biotechnol , vol.31 , pp. 439-441
    • Allyse, M.1    Michie, M.2
  • 41
    • 84883880710 scopus 로고    scopus 로고
    • Paternalism and the ACMG recommendations on genomic incidental findings: Patients seen but not heard
    • Townsend A, Adam S, Birch PH, Friedman JM. Paternalism and the ACMG recommendations on genomic incidental findings: patients seen but not heard. Genet Med 2013;15:751-752.
    • (2013) Genet Med , vol.15 , pp. 751-752
    • Townsend, A.1    Adam, S.2    Birch, P.H.3    Friedman, J.M.4
  • 43
    • 84949192990 scopus 로고    scopus 로고
    • National Cancer Institute Summary: National Cancer Institute Biospecimen Best Practices Forum Accessed 6 March 2014
    • National Cancer Institute, National Institutes of Health, Office of Biorepositories and Bioscpecimen Research. Summary: National Cancer Institute Biospecimen Best Practices Forum. 2007. http://biospecimens.cancer.gov/practices/forum/boston2007/pdf/FINAL-11-05-07-NCI-BPs-Forum-Boston-Summary-Rev1-24-08-Ed.pdf. Accessed 6 March, 2014.
    • (2007) National Institutes of Health, Office of Biorepositories and Bioscpecimen Research
  • 46
    • 84856859316 scopus 로고    scopus 로고
    • Managing the introduction of biobanks to potential participants: Lessons from a deliberative public forum
    • O'Doherty K, Ibrahim T, Hawkins A, Burgess M, Watson P. Managing the introduction of biobanks to potential participants: lessons from a deliberative public forum. Biopreserv Biobank 2012;10:12-21.
    • (2012) Biopreserv Biobank , vol.10 , pp. 12-21
    • O'Doherty, K.1    Ibrahim, T.2    Hawkins, A.3    Burgess, M.4    Watson, P.5
  • 47
    • 34250621473 scopus 로고    scopus 로고
    • Community engagement and informed consent in the International HapMap project
    • International HapMap Consortium
    • Rotimi C, Leppert M, Matsuda I, et al.; International HapMap Consortium. Community engagement and informed consent in the International HapMap project. Community Genet 2007;10:186-198.
    • (2007) Community Genet , vol.10 , pp. 186-198
    • Rotimi, C.1    Leppert, M.2    Matsuda, I.3
  • 48
    • 84859625761 scopus 로고    scopus 로고
    • Michigan BioTrust for Health: Public support for using residual dried blood spot samples for health research
    • Duquette D, Langbo C, Bach J, Kleyn M. Michigan BioTrust for Health: public support for using residual dried blood spot samples for health research. Public Health Genomics 2012;15:146-155.
    • (2012) Public Health Genomics , vol.15 , pp. 146-155
    • Duquette, D.1    Langbo, C.2    Bach, J.3    Kleyn, M.4
  • 49
    • 84865325244 scopus 로고    scopus 로고
    • Parents: Critical stakeholders in expanding newborn screening
    • Ross LF, Waggoner DJ. Parents: critical stakeholders in expanding newborn screening. J Pediatr 2012;161:385-389.
    • (2012) J Pediatr , vol.161 , pp. 385-389
    • Ross, L.F.1    Waggoner, D.J.2
  • 50
    • 84949287102 scopus 로고    scopus 로고
    • Charter for Illinois Genetic and Metabolic Advisory Committee Accessed 6 March, 2014
    • Charter for Illinois Genetic and Metabolic Advisory Committee. http://www.ilga. gov/legislation/ilcs/ilcs3.aspActID=2956&ChapterID=35. Accessed 6 March, 2014.
  • 53
    • 84888306320 scopus 로고    scopus 로고
    • Discretionary Advisory Committee on Heritable Disorders in Newborns and Children, Department of Health and Human Services Accessed 6 March, 2014
    • Discretionary Advisory Committee on Heritable Disorders in Newborns and Children, Department of Health and Human Services. Recommended uniform screening panel. 2013. http://www.hrsa.gov/advisorycommittees/mchbadvisory/heritabledisorders/recommendedpanel/index.html. Accessed 6 March, 2014.
    • (2013) Recommended Uniform Screening Panel


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.