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

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Abstract

Large population biobanks, important resources for genomic research, also present ethical challenges. The Michigan BioTrust for Health makes dried bloodspots (DBS) leftover from newborn screening, including ~4.5 million collected before 2010 without written consent, available for health research. Absent prospectively gathered consent and/or current engagement with 18- to 29-year olds, little is known about opinions and beliefs from this age group about use of the bloodspots for research. We engaged 2,101 students—BioTrust participants and their peers—at information booths at 20 college campuses across the state to educate youth about the BioTrust and gather information about consent preferences and about hopes and concerns about this public health program. We surveyed student stakeholder DBS research consent preferences and fielded a “postengagement” survey to gauge the attitudes of participants and to evaluate the campus engagement. The most prevalent themes in open-ended comments were support for biobank research and concern that Michiganders are not aware of their participation. While 78 % of students said they would, if asked, opt in to the BioTrust, half of these preferred to be contacted each time a researcher sought to use their DBS. Students reported great interest in the topic and strong likelihood to share what they had learned. BioTrust participants are interested in learning about their role in an initiative whose goals they widely support. Public engagement is particularly important to biobank participants who, absent traditional consent practices, are unaware of their participation. Health-fair style engagements were effective for targeting college-aged stakeholders, communicating complex messages, and likely increasing knowledge. Retrospective biobanks and biobanks that collect proxy consent need policies to respect those who would opt out and will need resources to educate participants and conduct community outreach that is a safeguard to public trust.

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References

  • 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

    Article  PubMed Central  PubMed  Google Scholar 

  • 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

    Article  PubMed Central  PubMed  Google Scholar 

  • Campbell AV (2007) The ethical challenges of genetic databases: Safeguarding altruism and trust. King’s Law J 18(2):227–245

    Google Scholar 

  • Carmichael M (2011) Newborn screening: A spot of trouble. Nature 475(7355):156–158. doi:10.1038/475156a

    Article  CAS  PubMed  Google Scholar 

  • Clayton EW (2005) Informed consent and biobanks. J Law Med Ethics 33(1):15–21

    Article  PubMed  Google Scholar 

  • Couzin-Frankel J (2009) Newborn blood collections: Science gold mine, ethical minefield. Science 324:166–168

    Article  CAS  PubMed  Google Scholar 

  • 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

    Article  CAS  PubMed  Google Scholar 

  • 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

  • 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

    Article  CAS  PubMed  Google Scholar 

  • Fleck LM, Mongoven A, Marzec S (2008) Stored blood spots: ethical and policy challenges. Michigan State University, Institute for Public Policy and Social Research

  • Fullerton SM, Anderson NR, Guzauskas G, Freeman D, Fryer-Edwards K (2010) Meeting the governance challenges of next-generation biorepository research. Sci Transl Med 2(15):15cm3

    Article  PubMed Central  PubMed  Google Scholar 

  • Giddens A (1990) The consequences of modernity. Stanford University Press, Stanford

    Google Scholar 

  • Green J, Thorogood N (2009) Qualitative methods for health research. Sage, Los Angeles

    Google Scholar 

  • Gunderson M (1990) Justifying a principle of informed consent: A case study in autonomy-based ethics. Public Aff Q 4(3):249–265

    PubMed  Google Scholar 

  • 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

    Article  Google Scholar 

  • 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

    Article  PubMed  Google Scholar 

  • 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

    Google Scholar 

  • Hofmann BM (2008) Bypassing consent for research on biological material. Nat Biotechnol 26(9):979–980. doi:10.1038/nbt0908-979b

    Article  CAS  PubMed  Google Scholar 

  • 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

  • IPEDS Data Center. [Web page]. Available from http://nces.ed.gov/ipeds/datacenter/. Accessed 8 Nov 2013

  • 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

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  • 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

    Google Scholar 

  • Kon AA (2010) The shared decision-making continuum. JAMA 304(8):903–904

    Article  CAS  PubMed  Google Scholar 

  • 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

    Google Scholar 

  • 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

    Article  PubMed Central  PubMed  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

    Article  Google Scholar 

  • 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

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  • McVicar B (2014) Database: See how tuition hikes have affected rich, poor, middle-income students at your college. [blog post] 2 April 2014. Available from http://www.mlive.com/news/grand-rapids/index.ssf/2014/04/database_see_how_tuition_hikes.html. Accessed 14 May 2014

  • 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

    Article  PubMed Central  PubMed  Google Scholar 

  • 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

  • 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

    PubMed  Google Scholar 

  • 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

  • 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

    Article  Google Scholar 

  • O’Doherty KC, Burgess MM, Edwards K, Gallagher RP, Hawkins AK, Kaye J, McCaffrey, Winickoff DE (2011) From consent to institutions: designing adaptive governance for genomic biobanks. Soc Sci Med 73(3):367–374

    Article  PubMed  Google Scholar 

  • 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

    Article  PubMed  Google Scholar 

  • 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

    Article  CAS  PubMed  Google Scholar 

  • 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

    Article  PubMed Central  PubMed  Google Scholar 

  • 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

    Article  PubMed Central  PubMed  Google Scholar 

  • 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

    Article  Google Scholar 

  • 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

    Article  PubMed Central  PubMed  Google Scholar 

  • Ruggles S, Alexander JT, Genadek K, Goeken R, Schroeder MB, Sobek M (2010) Integrated Public Use Microdata Series: Version 5.0 [Machine-readable database]. University of Minnesota, Minneapolis

    Google Scholar 

  • 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

    Article  Google Scholar 

  • Shickle D (2006) The consent problem within DNA biobanks. Stud Hist Philos Sci Part C: Stud Hist Philos Biol Biomed Sci 37(3):503–519. doi:10.1016/j.shpsc.2006.06.007

    Article  Google Scholar 

  • Solbakk JH, Holm S, Hofmann B (2009) The ethics of research biobanking. Springer, Dordrecht

    Book  Google Scholar 

  • 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

    Article  PubMed  Google Scholar 

  • 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

    Article  Google Scholar 

  • 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

    PubMed Central  PubMed  Google Scholar 

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Acknowledgments

This work was funded by the National Institute of Child Health and Human Development, grant number 5-R01-HD-067264-02, Linking Community Engagement Research to Public Health Biobank Practice. The authors gratefully acknowledge C. Daniel Myers, Ph.D., and Susan B. King, D.Min, for their helpful input throughout the project. We also thank our grant collaborators at Michigan State University, Ann Mongoven, Meta Kreiner and Andrea Sexton for weekly discussions that informed our approach to qualitative analysis, and Sayeh Nikpay for her assistance with Census data analysis.

Compliance with Ethics

This study was conducted with oversight by the University of Michigan IRB and in compliance with current laws in the USA. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was not obtained from survey participants because the responses were anonymous.

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Authors and Affiliations

  1. Life Sciences and Society Program, University of Michigan School of Public Health, 1415 Washington Heights, Suite 4605, Ann Arbor, MI, 48109-2029, USA

    Tevah Platt, Jodyn Platt, Daniel B. Thiel, Nicole Fisher & Sharon L. R. Kardia

  2. Department of Health Management and Policy, University of Michigan School of Public Health, Ann Arbor, MI, USA

    Jodyn Platt

  3. Department of Epidemiology, University of Michigan School of Public Health, Ann Arbor, MI, USA

    Sharon L. R. Kardia

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  1. Tevah Platt
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  4. Nicole Fisher
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  5. Sharon L. R. Kardia
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Correspondence to Tevah Platt.

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Supplementary Fig. 1

Trifold distributed at campus events: The trifold distributed at campus events summarized key points from presentations and allowed students to see at a glance, based on place and date of birth, whether their bloodspots had been stored for health research (PDF 835 kb)

Supplementary Table 1

(DOCX 25 kb)

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Platt, T., Platt, J., Thiel, D.B. et al. ‘Cool! and creepy’: engaging with college student stakeholders in Michigan’s biobank. J Community Genet 5, 349–362 (2014). https://doi.org/10.1007/s12687-014-0190-4

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  • DOI: https://doi.org/10.1007/s12687-014-0190-4

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