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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

Keep up to date with the latest research on this topic with citation updates for this article.

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Stuart A. Ali, Cassandra Soo, Godfred Agongo, Marianne Alberts, Lucas Amenga-Etego, Romuald P. Boua, Ananyo Choudhury, Nigel J. Crowther, Cornelius Depuur, F. Xavier Gómez-Olivé, Issa Guiraud, Tilahun N. Haregu, Scott Hazelhurst, Kathleen Kahn, Christopher Khayeka-Wandabwa, Catherine Kyobutungi, Zané Lombard, Felistas Mashinya, Lisa Micklesfield, Shukri F. Mohamed, Freedom Mukomana, Seydou Nakanabo-Diallo, Hamtandi M. Natama, Nicholas Ngomi, Engelbert A. Nonterah, Shane A. Norris, Abraham R. Oduro, Athanase M. Somé, Hermann Sorgho, Paulina Tindana, Halidou Tinto, Stephen Tollman, Rhian Twine, Alisha Wade, Osman Sankoh & Michèle Ramsay. (2018) Genomic and environmental risk factors for cardiometabolic diseases in Africa: methods used for Phase 1 of the AWI-Gen population cross-sectional study. Global Health Action 11:sup2.
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Aaron Goldenberg & Kyle Brothers. (2018) Misplaced Trust: Building Research Relationships in the Age of Biorepository Networks. The American Journal of Bioethics 18:4, pages 21-23.
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Articles from other publishers (45)

María C. Sánchez, Juan Carlos Hernández Clemente & Fernando J. García López. (2023) Public and Patients’ Perspectives Towards Data and Sample Sharing for Research: An Overview of Empirical Findings. Journal of Empirical Research on Human Research Ethics 18:5, pages 319-345.
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Jan Domaradzki & Dariusz Walkowiak. (2023) When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes. Journal of Religion and Health.
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Jan Domaradzki, Justyna Czekajewska & Dariusz Walkowiak. (2023) To donate or not to donate? Future healthcare professionals’ opinions on biobanking of human biological material for research purposes. BMC Medical Ethics 24:1.
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Ana S. Iltis, Liz Rolf, Lauren Yaeger, Melody S. Goodman & James M. DuBois. (2023) Attitudes and beliefs regarding race‐targeted genetic testing of Black people: A systematic review . Journal of Genetic Counseling 32:2, pages 435-461.
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Thibaud Deruelle, Veronika Kalouguina, Philipp Trein & Joël Wagner. (2022) Is there a “pandemic effect” on individuals’ willingness to take genetic tests?. European Journal of Human Genetics 31:3, pages 360-362.
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Natalia Antonova & Ksenia Eritsyan. (2022) It is not a big deal: a qualitative study of clinical biobank donation experience and motives. BMC Medical Ethics 23:1.
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Ali Ibrahim Mohammed-Ali, Eyoab Iyasu Gebremeskel, Emmanuel Yenshu, Theobald Nji, Apungwa Cornelius Ntabe, Samuel Wanji, Godfrey B Tangwa & Nchangwi Syntia Munung. (2022) Informed consent in a tuberculosis genetic study in Cameroon: information overload, situational vulnerability and diagnostic misconception. Research Ethics 18:4, pages 265-280.
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Reinder Broekstra, Judith L. Aris-Meijer, Els L. M. Maeckelberghe, Ronald P. Stolk & Sabine Otten. (2021) Motives for withdrawal of participation in biobanking and participants’ willingness to allow linkages of their data. European Journal of Human Genetics 30:3, pages 367-377.
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Kathleen M. West, Kerri L. Cavanaugh, Erika Blacksher, Stephanie M. Fullerton, Ebele M. Umeukeje, Bessie Young & Wylie Burke. (2021) Stakeholder Perspectives on Returning Nonactionable Apolipoprotein L1 (APOL1) Genetic Results to African American Research Participants. Journal of Empirical Research on Human Research Ethics 17:1-2, pages 4-14.
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Ma’n H. Zawati. 2022. Reciprocity in Population Biobanks. Reciprocity in Population Biobanks 95 142 .
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Anja Köngeter, Martin Jungkunz, Eva C. Winkler, Christoph Schickhardt & Katja Mehlis. 2022. Datenreiche Medizin und das Problem der Einwilligung. Datenreiche Medizin und das Problem der Einwilligung 185 210 .
Gesine Richter, Christoph Borzikowsky, Bimba Franziska Hoyer, Matthias Laudes & Michael Krawczak. (2021) Secondary research use of personal medical data: patient attitudes towards data donation. BMC Medical Ethics 22:1.
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Rezvan Rajabzadeh, Leila Janani & Seyed Abbas Motevalian. (2021) Effects of different invitation strategies on participation in a cohort study of Iranian public sector employees: a cluster randomized trial. BMC Medical Research Methodology 21:1.
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Giovanna Nunes Vilaza, David Coyle & Jakob Eyvind Bardram. (2021) Public Attitudes to Digital Health Research Repositories: Cross-sectional International Survey. Journal of Medical Internet Research 23:10, pages e31294.
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Hélène Nobile, Pascal Borry, Jennifer Moldenhauer & Manuela M Bergmann. (2021) Return of Results in Population Studies: How Do Participants Perceive Them?. Public Health Ethics 14:1, pages 12-22.
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Prasanna Warrier, Calvin Wai-Loon Ho, Susan Bull, Mario Vaz & Manjulika Vaz. (2021) Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India. Wellcome Open Research 6, pages 5.
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Marta Fadda, Maddalena Fiordelli, Rebecca Amati, Ilaria Falvo, Aliaa Ibnidris, Samia Hurst & Emiliano Albanese. (2020) Returning individual‐specific results of a dementia prevalence study: insights from prospective participants living in Switzerland. International Journal of Geriatric Psychiatry 36:1, pages 207-214.
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Rebecca Sheridan, Jacqueline Martin-Kerry, Joanna Hudson, Adwoa Parker, Peter Bower & Peter Knapp. (2020) Why do patients take part in research? An overview of systematic reviews of psychosocial barriers and facilitators. Trials 21:1.
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Laura M. Beskow, Catherine M. Hammack-Aviran & Kathleen M. Brelsford. (2020) Developing model biobanking consent language: what matters to prospective participants?. BMC Medical Research Methodology 20:1.
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CHARLOTTE H.C. BOMHOF, LISA VAN BODEGOM, MEIKE W. VERNOOIJ, WIM PINXTEN, INEZ D. DE BEAUFORT & ELINE M. BUNNIK. (2020) The Impact of Incidental Findings Detected During Brain Imaging on Research Participants of the Rotterdam Study: An Interview Study. Cambridge Quarterly of Healthcare Ethics 29:4, pages 542-556.
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Gaia Barazzetti, Francesca Bosisio, Daria Koutaissoff & Brenda Spencer. (2020) Broad consent in practice: lessons learned from a hospital-based biobank for prospective research on genomic and medical data. European Journal of Human Genetics 28:7, pages 915-924.
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Gesine Richter, Eva De Clercq, Marcel Mertz & Alena Buyx. 2020. Secondary Findings in Genomic Research. Secondary Findings in Genomic Research 99 132 .
Sebastian Schleidgen & Kyle B. Brothers. 2020. Secondary Findings in Genomic Research. Secondary Findings in Genomic Research 77 98 .
Altovise T. Ewing, Nnenna Kalu, Gloria Cain, Lori H. Erby, Luisel J. Ricks-Santi, Eva Tetteyfio-Kidd Telemaque & Denise M. Scott. (2019) Factors associated with willingness to provide biospecimens for genetics research among African American cancer survivors. Journal of Community Genetics 10:4, pages 471-480.
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Domaradzki & Pawlikowski. (2019) Public Attitudes toward Biobanking of Human Biological Material for Research Purposes: A Literature Review. International Journal of Environmental Research and Public Health 16:12, pages 2209.
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Lea L. Skovgaard, Sarah Wadmann & Klaus Hoeyer. (2019) A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good. Health Policy 123:6, pages 564-571.
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Sebastian Schleidgen, Alma Husedzinovic, Dominik Ose, Christoph Schickhardt, Christof von Kalle & Eva C. Winkler. (2017) Between Minimal and Greater Than Minimal Risk: How Research Participants and Oncologists Assess Data-Sharing and the Risk of Re-identification in Genomic Research. Philosophy & Technology 32:1, pages 39-55.
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Bart Jacobs & Jean Popma. (2019) Medical research, Big Data and the need for privacy by design. Big Data & Society 6:1, pages 205395171882435.
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Pascal Borry, Heidi Beate Bentzen, Isabelle Budin-Ljøsne, Martina C. Cornel, Heidi Carmen Howard, Oliver Feeney, Leigh Jackson, Deborah Mascalzoni, Álvaro Mendes, Borut Peterlin, Brigida Riso, Mahsa Shabani, Heather Skirton, Sigrid Sterckx, Danya Vears, Matthias Wjst & Heike Felzmann. (2017) The challenges of the expanded availability of genomic information: an agenda-setting paper. Journal of Community Genetics 9:2, pages 103-116.
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Francis Masiye, Bongani Mayosi & Jantina de Vries. (2017) “I passed the test!” Evidence of diagnostic misconception in the recruitment of population controls for an H3Africa genomic study in Cape Town, South Africa. BMC Medical Ethics 18:1.
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Gaia BarazzettiSamuele CavalliLazare BenaroyoAlain Kaufmann. (2017) “Still Rather Hazy at Present”: Citizens' and Physicians' Views on Returning Results from Biobank Research Using Broad Consent. Genetic Testing and Molecular Biomarkers 21:3, pages 159-165.
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Julie E. Richards, Emmi Bane, Stephanie M. Fullerton, Evette J. Ludman & Gail Jarvik. (2016) Allocation of Resources to Communication of Research Result Summaries. Journal of Empirical Research on Human Research Ethics 11:4, pages 364-369.
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Laura M. Beskow. (2016) Lessons from HeLa Cells: The Ethics and Policy of Biospecimens. Annual Review of Genomics and Human Genetics 17:1, pages 395-417.
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Paulina TindanaJantina de Vries. (2016) Broad Consent for Genomic Research and Biobanking: Perspectives from Low- and Middle-Income Countries. Annual Review of Genomics and Human Genetics 17:1, pages 375-393.
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Hélène Nobile, Manuela M. Bergmann, Jennifer Moldenhauer & Pascal Borry. (2016) Participants’ Accounts on Their Decision to Join a Cohort Study With an Attached Biobank. Journal of Empirical Research on Human Research Ethics 11:3, pages 237-249.
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Sarah Knerr & Rachel M. Ceballos. (2015) Giving samples or “getting checked”: measuring conflation of observational biospecimen research and clinical care in Latino communities. BMC Medical Ethics 16:1.
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Harriet JA Teare, Michael Morrison, Edgar A Whitley & Jane Kaye. (2015) Towards ‘Engagement 2.0’: Insights from a study of dynamic consent with biobank participants. DIGITAL HEALTH 1, pages 205520761560564.
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Casey Overby, Kristin Maloney, Tameka Alestock, Justin Chavez, David Berman, Reem Sharaf, Tom Fitzgerald, Eun-Young Kim, Kathleen Palmer, Alan Shuldiner & Braxton Mitchell. (2015) Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland. Journal of Personalized Medicine 5:3, pages 264-279.
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Irene Hirschberg, Hannes Kahrass & Daniel Strech. (2014) International requirements for consent in biobank research: qualitative review of research guidelines. Journal of Medical Genetics 51:12, pages 773-781.
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Ubaka Ogbogu, Maeghan Toews, Adam Ollenberger, Pascal Borry, Helene Nobile, Manuela Bergmann & Timothy Caulfield. (2014) Newspaper coverage of biobanks. PeerJ 2, pages e500.
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Saskia C. Sanderson, Michael A. Diefenbach, Randi Zinberg, Carol R. Horowitz, Margaret Smirnoff, Micol Zweig, Samantha Streicher, Ethylin Wang Jabs & Lynne D. Richardson. (2013) Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study. Journal of Community Genetics 4:4, pages 469-482.
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Sigrid Sterckx, Julian Cockbain, Heidi Howard, Isabelle Huys & Pascal Borry. (2013) “Trust is not something you can reclaim easily”: patenting in the field of direct-to-consumer genetic testing. Genetics in Medicine 15:5, pages 382-387.
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Leslie G. Biesecker. (2013) Incidental Variants Are Critical for Genomics. The American Journal of Human Genetics 92:5, pages 648-651.
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