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Special Report

Why do participants enroll in population biobank studies? A systematic literature review

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Pages 35-47 | Published online: 09 Jan 2014

References

  • Zika E, Paci D, Braun A et al. A European Survey on Biobanks: trends and issues. Public Health Genomics 14(2), 96–103 (2011).
  • Zielhuis GA. Biobanking for epidemiology. Public Health 126(3), 214–216 (2012).
  • Deutscher Ethikrat. Human Biobank for Research. Deutscher Ethikrat, Berlin, Germany (2010).
  • Cambon-Thomsen A. The social and ethical issues of post-genomic human biobanks. Nat. Rev. Genet. 5(11), 866–873 (2004).
  • Knoppers B, Kharaboyan L. “Deconstructing” biobank communication of results. SCRIPTed 6(3), 677–684 (2009).
  • Patel M, Doku V, Tennakoon L. Challenges in recruitment of research participants. Adv. Psychiatr. Treat. 9, 229–238 (2003).
  • Porteri C, Borry P. A proposal for a model of informed consent for the collection, storage and use of biological materials for research purposes. Patient Educ. Couns. 71(1), 136–142 (2008).
  • Hansson MG, Dillner J, Bartram CR, Carlson JA, Helgesson G. Should donors be allowed to give broad consent to future biobank research? Lancet Oncol. 7(3), 266–269 (2006).
  • MansonN, O’NeillO. In: Rethinking Informed Consent in Bioethics. Cambridge University Press, Cambridge, UK (2007).
  • Appelbaum PS, Lidz CW. Clinical ethics versus clinical research. Am. J. Bioeth. 6(4), 53–55; discussion W42–W45 (2006).
  • Appelbaum PS, Roth LH, Lidz CW, Benson P, Winslade W. False hopes and best data: consent to research and the therapeutic misconception. Hastings Cent. Rep. 17(2), 20–24 (1987).
  • Clayton EW, Ross LF. Implications of disclosing individual results of clinical research. JAMA 295(1), 37; author reply 37–38 (2006).
  • Treloar SA, Morley KI, Taylor SD, Hall WD. Why do they do it? A pilot study towards understanding participant motivation and experience in a large genetic epidemiological study of endometriosis. Community Genet. 10(2), 61–71 (2007).
  • Hallowell N, Cooke S, Crawford G, Lucassen A, Parker M, Snowdon C. An investigation of patients’ motivations for their participation in genetics-related research. J. Med. Ethics 36(1), 37–45 (2010).
  • Henderson G, Garrett J, Bussey-Jones J, Moloney ME, Blumenthal C, Corbie-Smith G. Great expectations: views of genetic research participants regarding current and future genetic studies. Genet. Med. 10(3), 193–200 (2008).
  • Busby H. Consent, trust and ethics: reflections on the findings of an interview based study with people donating blood for genetic research for research within the NHS. Clin. Ethics 1, 211–215 (2006).
  • Cadigan RJ, Michie M, Henderson G, Davis AM, Beskow LM. The meaning of genetic research results: reflections from individuals with and without a known genetic disorder. J. Empir. Res. Hum. Res. Ethics 6(4), 30–40 (2011).
  • Richards MP, Ponder M, Pharoah P, Everest S, Mackay J. Issues of consent and feedback in a genetic epidemiological study of women with breast cancer. J. Med. Ethics 29(2), 93–96 (2003).
  • Michie M, Henderson G, Garrett J, Corbie-Smith G. “If I could in a small way help”: motivations for and beliefs about sample donation for genetic research. J. Empir. Res. Hum. Res. Ethics 6(2), 57–70 (2011).
  • Axler RE, Irvine R, Lipworth W, Morrell B, Kerridge IH. Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research. Pathobiology 75(6), 323–329 (2008).
  • Tabor HK, Brazg T, Crouch J et al. Parent perspectives on pediatric genetic research and implications for genotype-driven research recruitment. J. Empir. Res. Hum. Res. Ethics 6(4), 41–52 (2011).
  • Harris ED, Ziniel SI, Amatruda JG et al. The beliefs, motivations, and expectations of parents who have enrolled their children in a genetic biorepository. Genet. Med. 14(3), 330–337 (2012).
  • Haimes E, Whong-Barr M. Key issues in genetic epidemiology: lessons from a UK based empirical study. TRAMES 8(I/2), 105–163 (2004).
  • Helgesson G, Hansson MG, Ludvigsson J, Swartling U. Practical matters, rather than lack of trust, motivate non-participation in a long-term cohort trial. Pediatr. Diabetes 10(6), 408–412 (2009).
  • Trinidad SB, Fullerton SM, Bares JM, Jarvik GP, Larson EB, Burke W. Genomic research and wide data sharing: views of prospective participants. Genet. Med. 12(8), 486–495 (2010).
  • Melas PA, Sjöholm LK, Forsner T et al. Examining the public refusal to consent to DNA biobanking: empirical data from a Swedish population-based study. J. Med. Ethics 36(2), 93–98 (2010).
  • Kirkland SA, Raina PS, Wolfson C et al. Exploring the acceptability and feasibility of conducting a large longitudinal population-based study in Canada. Can. J. Aging 28(3), 231–242 (2009).
  • Halverson CM, Ross LF. Incidental findings of therapeutic misconception in biobank-based research. Genet. Med. 14(6), 611–615 (2012).
  • Meulenkamp TM, Gevers SK, Bovenberg JA, Koppelman GH, van Hylckama Vlieg A, Smets EM. Communication of biobanks’ research results: what do (potential) participants want? Am. J. Med. Genet. A 152A(10), 2482–2492 (2010).
  • Godard B, Marshall J, Laberge C. Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE Project. Community Genet. 10(3), 147–158 (2007).
  • McCarty CA, Chapman-Stone D, Derfus T, Giampietro PF, Fost N; Marshfield Clinic PMRP Community Advisory Group. Community consultation and communication for a population-based DNA biobank: the Marshfield Clinic Personalized Medicine Research Project. Am. J. Med. Genet. A 146A(23), 3026–3033 (2008).
  • Johnsson L, Helgesson G, Rafnar T et al. Hypothetical and factual willingness to participate in biobank research. Eur. J. Hum. Genet. 18(11), 1261–1264 (2010).
  • Hartge P. Participation in population studies. Epidemiology 17(3), 252–254 (2006).
  • Booker CL, Harding S, Benzeval M. A systematic review of the effect of retention methods in population-based cohort studies. BMC Public Health 11, 249 (2011).
  • Dixon-Woods M, Ashcroft RE, Jackson CJ et al. Beyond “misunderstanding”: written information and decisions about taking part in a genetic epidemiology study. Soc. Sci. Med. 65(11), 2212–2222 (2007).
  • Streicher SA, Sanderson SC, Jabs EW et al. Reasons for participating and genetic information needs among racially and ethnically diverse biobank participants: a focus group study. J. Community Genet. 2(3), 153–163 (2011).
  • Lemke AA, Wolf WA, Hebert-Beirne J, Smith ME. Public and biobank participant attitudes toward genetic research participation and data sharing. Public Health Genomics 13(6), 368–377 (2010).
  • McNamara B. The ‘Trusting Citizen’: Participating in Genetic Research (PSLaT-TCTS). Public Sociologies: Lessons and Trans-Tasman Comparisons: TASA/SAANZ 2007 Joint Conference Proceedings. Department of Sociology, University of Auckland, Australia, 2007.
  • Allen J, McNamara B. Reconsidering the value of consent in biobank research. Bioethics 25(3), 155–166 (2011).
  • Haddow G. “We only did it because he asked us”: gendered accounts of participation in a population genetic data collection. Soc. Sci. Med. 69(7), 1010–1017 (2009).
  • Joseph JW, Neidich AB, Ober C, Ross LF. Empirical data about women’s attitudes toward a biobank focused on pregnancy outcomes. Am. J. Med. Genet. A 146(3), 305–311 (2008).
  • Ormond KE, Cirino AL, Helenowski IB, Chisholm RL, Wolf WA. Assessing the understanding of biobank participants. Am. J. Med. Genet. A 149A(2), 188–198 (2009).
  • Sinicrope PS, Patten CA, Bonnema SM et al. Healthy women’s motivators and barriers to participation in a breast cancer cohort study: a qualitative study. Ann. Epidemiol. 19(7), 484–493 (2009).
  • McCarty CA, Nair A, Austin DM, Giampietro PF. Informed consent and subject motivation to participate in a large, population-based genomics study: the Marshfield Clinic Personalized Medicine Research Project. Community Genet. 10(1), 2–9 (2007).
  • Daniels JL, Savitz DA, Bradley C et al. Attitudes toward participation in a pregnancy and child cohort study. Paediatr. Perinat. Epidemiol. 20(3), 260–266 (2006).
  • Fry CL. Research participation and internal normativity: understanding why people participate. Am. J. Bioeth. 8(10), 43–44 (2008).
  • Hoeyer K. ‘Science is really needed – that’s all I know’: informed consent and the non-verbal practices of collecting blood for genetic research in northern Sweden. New Genet. Soc. 22(3), 229–244 (2003).
  • Tutton R. Gift relationships in genetics research. Sci. Cult. (Lond). 11(4), 523–542 (2002).
  • Ducournau P, Strand R. Trust, distrust and co-production: the relationship between research biobanks and donors. In: The Ethics of Research Biobanking. Solbakk JH, Holm S, Hofman B (Eds). Springer, New York, USA, 115–133 (2009).
  • Kass NE, Sugarman J, Faden R, Schoch-Spana M. Trust, the fragile foundation of contemporary biomedical research. Hastings Cent. Rep. 26(5), 25–29 (1996).
  • Campbell AV. The ethical challenges of genetic databases: safeguarding altruism and trust. King’s Law J. 18(2), 227–245 (2007).
  • Jansen LA. The ethics of altruism in clinical research. Hastings Cent. Rep. 39(4), 26–36 (2009).
  • Barr M. ‘I’m not really read up on genetics’: biobanks and the social context of informed consent. BioSocieties 1, 251–262 (2006).
  • de Melo-Martín I, Ho A. Beyond informed consent: the therapeutic misconception and trust. J. Med. Ethics 34(3), 202–205 (2008).
  • Miller FA, Christensen R, Giacomini M, Robert JS. Duty to disclose what? Querying the putative obligation to return research results to participants. J. Med. Ethics 34(3), 210–213 (2008).
  • Parker LS. The future of incidental findings: should they be viewed as benefits? J. Law. Med. Ethics 36(2), 341–351, 213 (2008).
  • Wolf SM, Lawrenz FP, Nelson CA et al. Managing incidental findings in human subjects research: analysis and recommendations. J. Law. Med. Ethics 36(2), 219–248, 211 (2008).
  • Wolf SM, Crock BN, Van Ness B et al. Managing incidental findings and research results in genomic research involving biobanks and archived data sets. Genet. Med. 14(4), 361–384 (2012).
  • Fernandez CV, Kodish E, Weijer C. Informing study participants of research results: an ethical imperative. IRB 25(3), 12–19 (2003).
  • Ravitsky V, Wilfond BS. Disclosing individual genetic results to research participants. Am. J. Bioeth. 6(6), 8–17 (2006).
  • Fisher R. A closer look: are we subjects or are we donors? Am. J. Bioeth. 8(11), 49–50 (2008).
  • Kaufman D, Murphy J, Scott J, Hudson K. Subjects matter: a survey of public opinions about a large genetic cohort study. Genet. Med. 10(11), 831–839 (2008).
  • Murphy J, Scott J, Kaufman D, Geller G, LeRoy L, Hudson K. Public expectations for return of results from large-cohort genetic research. Am. J. Bioeth. 8(11), 36–43 (2008).
  • Green RC, Ziniel SI, Huntington NL et al. Diagnostic misconception underlies some preferences for return of genetic research results from a DNA repository. Presented at: Conference of American Society of Human Genetics. Montréal, Canada, 2011 (Poster Presentation).
  • Hoeyer K. The ethics of research biobanking: a critical review of the literature. Biotechnol. Genet. Eng. Rev. 25, 429–452 (2008).
  • Toccaceli V, Fagnani C, Nisticò L et al. Research understanding, attitude and awareness towards biobanking: a survey among Italian twin participants to a genetic epidemiological study. BMC Med. Ethics 10, 4 (2009).
  • Moher D, Liberati A, Tetzlaff J, Altman DG; PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. J. Clin. Epidemiol. 62(10), 1006–1012 (2009).
  • Coope C, Rose K, Glasier A, Stephenson J. How do women feel about their cervical cytology samples being used for research? J. Fam. Plann. Reprod. Health Care 38(1), 30–34 (2012).

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