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Volumn 5, Issue 4, 2014, Pages 349-362

‘Cool! and creepy’: engaging with college student stakeholders in Michigan’s biobank

Author keywords

Biobank; Community engagement; Informed consent; Newborn screening; Public attitudes; Public health; Public health education

Indexed keywords

ADULT; ARTICLE; ATTITUDE TO HEALTH; BIOBANK; BIOINFORMATICS; COLLEGE STUDENT; DRIED BLOOD SPOT TESTING; HEALTH EDUCATION; HEALTH PROGRAM; HUMAN; INFORMED CONSENT; NEWBORN SCREENING; PRIORITY JOURNAL; STUDENT ATTITUDE; UNITED STATES;

EID: 84955210576     PISSN: 1868310X     EISSN: 18686001     Source Type: Journal    
DOI: 10.1007/s12687-014-0190-4     Document Type: Article
Times cited : (13)

References (47)
  • 1
    • 84863393820 scopus 로고    scopus 로고
    • Public attitudes regarding the use of residual newborn screening specimens for research
    • PID: 22250018
    • Botkin JR, Rothwell E, Anderson R, Stark L, Goldenberg A, Lewis M, Burbank M, Wong B (2012) Public attitudes regarding the use of residual newborn screening specimens for research. Pediatrics 129(2):231–238. doi:10.1542/peds.2011-0970
    • (2012) Pediatrics , vol.129 , Issue.2 , pp. 231-238
    • Botkin, J.R.1    Rothwell, E.2    Anderson, R.3    Stark, L.4    Goldenberg, A.5    Lewis, M.6    Burbank, M.7    Wong, B.8
  • 2
    • 84872837310 scopus 로고    scopus 로고
    • Retention and research use of residual newborn screening bloodspots
    • PID: 23209103
    • Botkin JR, Goldenberg AJ, Rothwell E, Anderson RA, Lewis MH (2013) Retention and research use of residual newborn screening bloodspots. Pediatrics 131(1):120–127. doi:10.1542/peds.2012-0852
    • (2013) Pediatrics , vol.131 , Issue.1 , pp. 120-127
    • Botkin, J.R.1    Goldenberg, A.J.2    Rothwell, E.3    Anderson, R.A.4    Lewis, M.H.5
  • 3
    • 58149223088 scopus 로고    scopus 로고
    • The ethical challenges of genetic databases: Safeguarding altruism and trust
    • Campbell AV (2007) The ethical challenges of genetic databases: Safeguarding altruism and trust. King’s Law J 18(2):227–245
    • (2007) King’s Law J , vol.18 , Issue.2 , pp. 227-245
    • Campbell, A.V.1
  • 4
    • 79960421226 scopus 로고    scopus 로고
    • Newborn screening: A spot of trouble
    • COI: 1:CAS:528:DC%2BC3MXovFegsb4%3D, PID: 21753828
    • Carmichael M (2011) Newborn screening: A spot of trouble. Nature 475(7355):156–158. doi:10.1038/475156a
    • (2011) Nature , vol.475 , Issue.7355 , pp. 156-158
    • Carmichael, M.1
  • 5
    • 17844410916 scopus 로고    scopus 로고
    • Informed consent and biobanks
    • PID: 15934662
    • Clayton EW (2005) Informed consent and biobanks. J Law Med Ethics 33(1):15–21
    • (2005) J Law Med Ethics , vol.33 , Issue.1 , pp. 15-21
    • Clayton, E.W.1
  • 6
    • 64849093360 scopus 로고    scopus 로고
    • Newborn blood collections: Science gold mine, ethical minefield
    • COI: 1:CAS:528:DC%2BD1MXkvFyjs7c%3D, PID: 19359558
    • Couzin-Frankel J (2009) Newborn blood collections: Science gold mine, ethical minefield. Science 324:166–168
    • (2009) Science , vol.324 , pp. 166-168
    • Couzin-Frankel, J.1
  • 7
    • 0031041166 scopus 로고    scopus 로고
    • Designing a successful health fair to promote individual, family, and community health
    • COI: 1:STN:280:DyaK2s7ovFyjtQ%3D%3D, PID: 9037909
    • Dillon DL, Sternas K (1997) Designing a successful health fair to promote individual, family, and community health. J Community Health Nurs 14(1):1–14
    • (1997) J Community Health Nurs , vol.14 , Issue.1 , pp. 1-14
    • Dillon, D.L.1    Sternas, K.2
  • 8
    • 84958148435 scopus 로고    scopus 로고
    • DP02 (2007) Selected social characteristics in the United States. 2007–2011 American Community Survey. [Webpage]. Available from. Accessed 8 Nov 2013
    • DP02 (2007) Selected social characteristics in the United States. 2007–2011 American Community Survey. [Webpage]. Available from http://factfinder2.census.gov. Accessed 8 Nov 2013
  • 9
    • 84859625761 scopus 로고    scopus 로고
    • Michigan BioTrust for Health: Public support for using residual dried blood spot samples for health research
    • COI: 1:STN:280:DC%2BC38rjsFOqtw%3D%3D, PID: 22488457
    • Duquette D, Langbo C, Bach J, Kleyn M (2012) Michigan BioTrust for Health: Public support for using residual dried blood spot samples for health research. Public Health Genomics 15(3–4):146–155. doi:10.1159/00033656
    • (2012) Public Health Genomics , vol.15 , Issue.3-4 , pp. 146-155
    • Duquette, D.1    Langbo, C.2    Bach, J.3    Kleyn, M.4
  • 14
    • 0025463457 scopus 로고
    • Justifying a principle of informed consent: A case study in autonomy-based ethics
    • PID: 11659297
    • Gunderson M (1990) Justifying a principle of informed consent: A case study in autonomy-based ethics. Public Aff Q 4(3):249–265
    • (1990) Public Aff Q , vol.4 , Issue.3 , pp. 249-265
    • Gunderson, M.1
  • 15
    • 84881515010 scopus 로고    scopus 로고
    • Governing risk, engaging publics and engendering trust: new horizons for law and social science?
    • Harmon SH, Laurie G, Haddow G (2013) Governing risk, engaging publics and engendering trust: new horizons for law and social science? Sci Public Policy 40(1):25–33
    • (2013) Sci Public Policy , vol.40 , Issue.1 , pp. 25-33
    • Harmon, S.H.1    Laurie, G.2    Haddow, G.3
  • 16
    • 0141799750 scopus 로고    scopus 로고
    • Technological paternalism: on how medicine has reformed ethics and how technology can refine moral theory
    • PID: 12971295
    • Hofmann B (2003) Technological paternalism: on how medicine has reformed ethics and how technology can refine moral theory. Sci Eng Ethics 9(3):343–352
    • (2003) Sci Eng Ethics , vol.9 , Issue.3 , pp. 343-352
    • Hofmann, B.1
  • 17
    • 84958148437 scopus 로고    scopus 로고
    • Do biobanks promote paternalism? On the loss of autonomy in the quest for individual independence
    • Arnason, Nordal, Arnason, (eds), University of Iceland Press & Center for Ethics, Reykjavik
    • Hofmann B (2004) Do biobanks promote paternalism? On the loss of autonomy in the quest for individual independence. In: Arnason, Nordal, Arnason (eds) Blood and data: ethical, legal and social aspects of human genetic databases. University of Iceland Press & Center for Ethics, Reykjavik
    • (2004) Blood and data: ethical, legal and social aspects of human genetic databases
    • Hofmann, B.1
  • 18
    • 51349122508 scopus 로고    scopus 로고
    • Bypassing consent for research on biological material
    • COI: 1:CAS:528:DC%2BD1cXhtVygtLjK, PID: 18779801
    • Hofmann BM (2008) Bypassing consent for research on biological material. Nat Biotechnol 26(9):979–980. doi:10.1038/nbt0908-979b
    • (2008) Nat Biotechnol , vol.26 , Issue.9 , pp. 979-980
    • Hofmann, B.M.1
  • 19
    • 84958148438 scopus 로고    scopus 로고
    • Institute for Public Policy and Social Research-State of the State Survey (SOSS) nos. 60, 63, and 66 [Web page]. Available from. Accessed 13 Feb 2014
    • Institute for Public Policy and Social Research-State of the State Survey (SOSS) nos. 60, 63, and 66 [Web page]. Available from http://ippsr.msu.edu/soss/sossdata.htm. Accessed 13 Feb 2014
  • 20
    • 84958148439 scopus 로고    scopus 로고
    • IPEDS Data Center. [Web page]. Available from. Accessed 8 Nov 2013
    • IPEDS Data Center. [Web page]. Available from http://nces.ed.gov/ipeds/datacenter/. Accessed 8 Nov 2013
  • 21
    • 84859900558 scopus 로고    scopus 로고
    • From patients to partners: participant-centric initiatives in biomedical research
    • COI: 1:CAS:528:DC%2BC38XkvVKitbw%3D, PID: 22473380
    • Kaye J, Curren L, Anderson N, Edwards K, Stephanie M, Fullerton NK, Lund D et al (2012) From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 13(5):371–376
    • (2012) Nat Rev Genet , vol.13 , Issue.5 , pp. 371-376
    • Kaye, J.1    Curren, L.2    Anderson, N.3    Edwards, K.4    Stephanie, M.5    Fullerton, N.K.6    Lund, D.7
  • 22
    • 84890549124 scopus 로고    scopus 로고
    • Decision-making processes for the uptake and implementation of family-based therapy by eating disorder treatment teams: a qualitative study
    • Kimber M, Couturier J, Jack S, Niccols A, Van Blyderveen S, McVey G (2013) Decision-making processes for the uptake and implementation of family-based therapy by eating disorder treatment teams: a qualitative study. Int J Eat Disord. doi:10.1002/eat.22185
    • (2013) Int J Eat Disord
    • Kimber, M.1    Couturier, J.2    Jack, S.3    Niccols, A.4    Van Blyderveen, S.5    McVey, G.6
  • 23
    • 77955972459 scopus 로고    scopus 로고
    • The shared decision-making continuum
    • COI: 1:CAS:528:DC%2BC3cXhtVOksbrN, PID: 20736477
    • Kon AA (2010) The shared decision-making continuum. JAMA 304(8):903–904
    • (2010) JAMA , vol.304 , Issue.8 , pp. 903-904
    • Kon, A.A.1
  • 24
    • 84883481145 scopus 로고    scopus 로고
    • From newborn screening to population health research: Implementation of the Michigan BioTrust for Health
    • Langbo C, Bach J, Kleyn M, Downes FP (2013) From newborn screening to population health research: Implementation of the Michigan BioTrust for Health. Public Health Rep(Washington DC: 1974) 128(5):377–384
    • (2013) Public Health Rep(Washington DC: 1974) , vol.128 , Issue.5 , pp. 377-384
    • Langbo, C.1    Bach, J.2    Kleyn, M.3    Downes, F.P.4
  • 25
    • 79953327702 scopus 로고    scopus 로고
    • State laws regarding the retention and use of residual newborn screening blood samples
    • PID: 21444595
    • Lewis MH, Goldenberg A, Anderson R, Rothwell E, Botkin J (2011) State laws regarding the retention and use of residual newborn screening blood samples. Pediatrics 127(4):703–712. doi:10.1542/peds.2010-1468
    • (2011) Pediatrics , vol.127 , Issue.4 , pp. 703-712
    • Lewis, M.H.1    Goldenberg, A.2    Anderson, R.3    Rothwell, E.4    Botkin, J.5
  • 26
    • 57149115791 scopus 로고    scopus 로고
    • Community consultation and communication for a population-based DNA biobank: The Marshfield clinic personalized medicine research project
    • Available from Google Scholar
    • McCarty CA, Chapman-Stone D, Derfus T, Giampietro PF, Fost N (2008) Community consultation and communication for a population-based DNA biobank: The Marshfield clinic personalized medicine research project. Am J Med Genet A 146(23):3026–3033, Available from Google Scholar
    • (2008) Am J Med Genet A , vol.146 , Issue.23 , pp. 3026-3033
    • McCarty, C.A.1    Chapman-Stone, D.2    Derfus, T.3    Giampietro, P.F.4    Fost, N.5
  • 27
    • 77957931328 scopus 로고    scopus 로고
    • Informed consent in genomics and genetic research
    • COI: 1:CAS:528:DC%2BC3cXht12jt7vE, PID: 20477535
    • McGuire AL, Beskow LM (2010) Informed consent in genomics and genetic research. Annu Rev Genomics Hum Genet 11:361–381. doi:10.1146/annurev-genom-082509-141711
    • (2010) Annu Rev Genomics Hum Genet , vol.11 , pp. 361-381
    • McGuire, A.L.1    Beskow, L.M.2
  • 29
    • 77951468117 scopus 로고    scopus 로고
    • The value of using top-down and bottom-up approaches for building trust and transparency in biobanking
    • PID: 20395689
    • Meslin EM (2010) The value of using top-down and bottom-up approaches for building trust and transparency in biobanking. Public Health Genomics 13(4):207–214. doi:10.1159/000279622
    • (2010) Public Health Genomics , vol.13 , Issue.4 , pp. 207-214
    • Meslin, E.M.1
  • 30
    • 84958148442 scopus 로고    scopus 로고
    • About Your Baby's Blood Spots, Lansing, MI
    • Michigan Department of Community Health (2013) After Newborn Screening: About Your Baby's Blood Spots. Lansing, MI. http://www.michigan.gov/documents/mdch/Biotrust_Book_327197_7.pdf. Accessed 14 February 2014
    • (2013) After Newborn Screening
  • 31
    • 84861947935 scopus 로고    scopus 로고
    • IRB review and public health biobanking: a case study of the Michigan BioTrust for Health
    • PID: 22830178
    • Mongoven A, McGee H (2012) IRB review and public health biobanking: a case study of the Michigan BioTrust for Health. IRB 34(3):11–16
    • (2012) IRB , vol.34 , Issue.3 , pp. 11-16
    • Mongoven, A.1    McGee, H.2
  • 32
    • 84958148443 scopus 로고    scopus 로고
    • NCHEMS Information Center for Higher Education Policymaking and Analysis [Website]. Available from Accessed 14 May 2014
    • NCHEMS Information Center for Higher Education Policymaking and Analysis [Website]. Available from http://www.higheredinfo.org/dbrowser/index.php?measure=104 Accessed 14 May 2014
  • 33
    • 31844450561 scopus 로고    scopus 로고
    • A 10-year retrospective of research in health mass media campaigns: where do we go from here?
    • Noar, Seth M (2006) A 10-year retrospective of research in health mass media campaigns: where do we go from here? J Health Comm: Int Perspect 11(1):21–42. doi:10.1080/1080730500461059
    • (2006) J Health Comm: Int Perspect , vol.11 , Issue.1 , pp. 21-42
    • Noar1    Seth, M.2
  • 35
    • 71949131197 scopus 로고    scopus 로고
    • "Broad" consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose
    • PID: 19853341
    • Petrini C (2010) "Broad" consent, exceptions to consent and the question of using biological samples for research purposes different from the initial collection purpose. Soc Sci Med 70:217–220. doi:10.1016/j.socscimed.2009.10.004
    • (2010) Soc Sci Med , vol.70 , pp. 217-220
    • Petrini, C.1
  • 36
    • 84881496852 scopus 로고    scopus 로고
    • 'Born in Michigan? You're in the biobank': engaging population biobank participants through facebook advertisements
    • COI: 1:STN:280:DC%2BC3sjlt1WisQ%3D%3D, PID: 23796763
    • Platt JE, Platt T, Thiel D, Kardia SL (2013) 'Born in Michigan? You're in the biobank': engaging population biobank participants through facebook advertisements. Public Health Genomics 16(4):145–158. doi:10.1159/000351451
    • (2013) Public Health Genomics , vol.16 , Issue.4 , pp. 145-158
    • Platt, J.E.1    Platt, T.2    Thiel, D.3    Kardia, S.L.4
  • 37
    • 84893609873 scopus 로고    scopus 로고
    • Public preferences regarding informed consent models for participation in population-based genomic research
    • PID: 23660530
    • Platt J, Bollinger J, Dvoskin R, Kardia SL, Kaufman D (2014) Public preferences regarding informed consent models for participation in population-based genomic research. Genet Med 16(1):11–18. doi:10.1038/gim.2013.5
    • (2014) Genet Med , vol.16 , Issue.1 , pp. 11-18
    • Platt, J.1    Bollinger, J.2    Dvoskin, R.3    Kardia, S.L.4    Kaufman, D.5
  • 38
    • 77956396767 scopus 로고    scopus 로고
    • Is deidentification sufficient to protect health privacy in research?
    • PID: 20818545
    • Rothstein MA (2010) Is deidentification sufficient to protect health privacy in research? Am J Bioeth: AJOB 10(9):3. doi:10.1080/15265161.2010.494215
    • (2010) Am J Bioeth: AJOB , vol.10 , Issue.9 , pp. 3
    • Rothstein, M.A.1
  • 39
    • 77954055058 scopus 로고    scopus 로고
    • Policy issues and stakeholder concerns regarding the storage and use of residual newborn dried blood samples for research
    • Rothwell E, Anderson R, Botkin J (2010) Policy issues and stakeholder concerns regarding the storage and use of residual newborn dried blood samples for research. Pol Polit Nurs Pract 11(1):5–12
    • (2010) Pol Polit Nurs Pract , vol.11 , Issue.1 , pp. 5-12
    • Rothwell, E.1    Anderson, R.2    Botkin, J.3
  • 40
    • 79953298338 scopus 로고    scopus 로고
    • Concerns of newborn blood screening advisory committee members regarding storage and use of residual newborn screening blood spots
    • PID: 21330580
    • Rothwell EW, Anderson RA, Burbank MJ, Goldenberg AJ, Lewis MH, Stark LA, Botkin JR (2011) Concerns of newborn blood screening advisory committee members regarding storage and use of residual newborn screening blood spots. Am J Public Health 101(11):2111–2116. doi:10.2105/AJPH.2010.200485
    • (2011) Am J Public Health , vol.101 , Issue.11 , pp. 2111-2116
    • Rothwell, E.W.1    Anderson, R.A.2    Burbank, M.J.3    Goldenberg, A.J.4    Lewis, M.H.5    Stark, L.A.6    Botkin, J.R.7
  • 42
    • 0347124793 scopus 로고    scopus 로고
    • Assessing response rates and nonresponse bias in web and paper surveys
    • Sax LJ, Gilmartin SK, Bryant AN (2003) Assessing response rates and nonresponse bias in web and paper surveys. Res High Educ 44(4):409–432
    • (2003) Res High Educ , vol.44 , Issue.4 , pp. 409-432
    • Sax, L.J.1    Gilmartin, S.K.2    Bryant, A.N.3
  • 45
    • 77349115482 scopus 로고    scopus 로고
    • Not without my permission: Parents’ willingness to permit use of newborn screening samples for research
    • PID: 19602864
    • Tarini BA, Goldenberg A, Singer D, Clark SJ, Butchart A, Davis MM (2009) Not without my permission: Parents’ willingness to permit use of newborn screening samples for research. Public Health Genomics 13(3):125–130. doi:10.1159/000228724
    • (2009) Public Health Genomics , vol.13 , Issue.3 , pp. 125-130
    • Tarini, B.A.1    Goldenberg, A.2    Singer, D.3    Clark, S.J.4    Butchart, A.5    Davis, M.M.6
  • 46
    • 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, Hannon WH, Bailey DB, Goldman EB, Monaco J, Norgaard-Pedersen B, Terry SF, Johnson A, Howell RR (2011) Committee report: considerations and recommendations for national guidance regarding the retention and use of residual dried blood spot specimens after newborn screening. Genetics Med 13(7):621–624. doi:10.1097/GIM.0b013e3182147639
    • (2011) Genetics Med , vol.13 , Issue.7 , pp. 621-624
    • Therrell, B.L.1    Hannon, W.H.2    Bailey, D.B.3    Goldman, E.B.4    Monaco, J.5    Norgaard-Pedersen, B.6    Terry, S.F.7    Johnson, A.8    Howell, R.R.9
  • 47
    • 84899044783 scopus 로고    scopus 로고
    • Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for health
    • PID: 23893769
    • Thiel DB, Platt T, Platt J, King SB, Kardia SL (2013) Community perspectives on public health biobanking: an analysis of community meetings on the Michigan BioTrust for health. J Community Genet. doi:10.1007/s12687-013-0162-0
    • (2013) J Community Genet
    • Thiel, D.B.1    Platt, T.2    Platt, J.3    King, S.B.4    Kardia, S.L.5


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