IDEAS home Printed from https://ideas.repec.org/a/sae/clnure/v28y2019i1p30-51.html
   My bibliography  Save this article

Participants’ Understanding of Informed Consent for Biobanking: A Systematic Review

Author

Listed:
  • Elizabeth R. Eisenhauer
  • Alan R. Tait
  • Soo Young Rieh
  • Cynthia M. Arslanian-Engoren

Abstract

Nurses are increasingly asked to obtain consent from participants for biobanking studies. Biobanking has added unique complexities to informed consent. The purpose of this systematic review was to evaluate participants’ level of understanding of the information presented during the informed consent process unique to the donation of biological specimens for research. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were utilized to conduct the review. PubMed, EMBASE, CINAHL, PsycINFO, Scopus, Web of Science, and ProQuest bibliographic databases were searched. Results indicated that elements of informed consent unique to biobanking were poorly understood. Most studies had authors or funding associated with a biobank. Only one study disclosed and assessed participants’ understanding of moral risks. Increased disclosures, values-clarification, and presenting information via multiple modalities may facilitate understanding. There is a need to improve the quality of informed consent for biobanking studies by utilizing standardized instruments, definitions, and encouraging research about informed choice outside the biobanking industry.

Suggested Citation

  • Elizabeth R. Eisenhauer & Alan R. Tait & Soo Young Rieh & Cynthia M. Arslanian-Engoren, 2019. "Participants’ Understanding of Informed Consent for Biobanking: A Systematic Review," Clinical Nursing Research, , vol. 28(1), pages 30-51, January.
    • Handle: RePEc:sae:clnure:v:28:y:2019:i:1:p:30-51
    DOI: 10.1177/1054773817722690
    as

    Download full text from publisher

    File URL: https://journals.sagepub.com/doi/10.1177/1054773817722690
    Download Restriction: no
    File URL: https://libkey.io/10.1177/1054773817722690?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Purva Abhyankar & Barbara A. Summers & Galina Velikova & Hilary L. Bekker, 2014. "Framing Options as Choice or Opportunity," Medical Decision Making, , vol. 34(5), pages 567-582, July.
    2. Dixon-Woods, Mary & Ashcroft, Richard E. & Jackson, Clare J. & Tobin, Martin D. & Kivits, Joelle & Burton, Paul R. & Samani, Nilesh J., 2007. "Beyond "misunderstanding": Written information and decisions about taking part in a genetic epidemiology study," Social Science & Medicine, Elsevier, vol. 65(11), pages 2212-2222, December.
    3. Marshall, P.A. & Adebamowo, C.A. & Adeyemo, A.A. & Ogundiran, T.O. & Vekich, M. & Strenski, T. & Zhou, J. & Prewitt, T.E. & Cooper, R.S. & Rotimi, C.N., 2006. "Voluntary participation and informed consent international genetic research," American Journal of Public Health, American Public Health Association, vol. 96(11), pages 1989-1995.
    4. David Moher & Alessandro Liberati & Jennifer Tetzlaff & Douglas G Altman & The PRISMA Group, 2009. "Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement," PLOS Medicine, Public Library of Science, vol. 6(7), pages 1-6, July.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Abhyankar, Purva & Velikova, Galina & Summers, Barbara & Bekker, Hilary L., 2016. "Identifying components in consent information needed to support informed decision making about trial participation: An interview study with women managing cancer," Social Science & Medicine, Elsevier, vol. 161(C), pages 83-91.
    2. İlkay Unay-Gailhard & Mark A. Brennen, 2022. "How digital communications contribute to shaping the career paths of youth: a review study focused on farming as a career option," Agriculture and Human Values, Springer;The Agriculture, Food, & Human Values Society (AFHVS), vol. 39(4), pages 1491-1508, December.
    3. Mahin Ghafari & Vali Baigi & Zahra Cheraghi & Amin Doosti-Irani, 2016. "The Prevalence of Asymptomatic Bacteriuria in Iranian Pregnant Women: A Systematic Review and Meta-Analysis," PLOS ONE, Public Library of Science, vol. 11(6), pages 1-10, June.
    4. Santos Urbina & Sofía Villatoro & Jesús Salinas, 2021. "Self-Regulated Learning and Technology-Enhanced Learning Environments in Higher Education: A Scoping Review," Sustainability, MDPI, vol. 13(13), pages 1-12, June.
    5. Nadine Desrochers & Adèle Paul‐Hus & Jen Pecoskie, 2017. "Five decades of gratitude: A meta‐synthesis of acknowledgments research," Journal of the Association for Information Science & Technology, Association for Information Science & Technology, vol. 68(12), pages 2821-2833, December.
    6. Maryono, Maryono & Killoes, Aditya Marendra & Adhikari, Rajendra & Abdul Aziz, Ammar, 2024. "Agriculture development through multi-stakeholder partnerships in developing countries: A systematic literature review," Agricultural Systems, Elsevier, vol. 213(C).
    7. Alene Sze Jing Yong & Yi Heng Lim & Mark Wing Loong Cheong & Ednin Hamzah & Siew Li Teoh, 2022. "Willingness-to-pay for cancer treatment and outcome: a systematic review," The European Journal of Health Economics, Springer;Deutsche Gesellschaft für Gesundheitsökonomie (DGGÖ), vol. 23(6), pages 1037-1057, August.
    8. Agnieszka A. Tubis & Katarzyna Grzybowska, 2022. "In Search of Industry 4.0 and Logistics 4.0 in Small-Medium Enterprises—A State of the Art Review," Energies, MDPI, vol. 15(22), pages 1-26, November.
    9. García-Poole, Chloe & Byrne, Sonia & Rodrigo, María José, 2019. "How do communities intervene with adolescents at psychosocial risk? A systematic review of positive development programs," Children and Youth Services Review, Elsevier, vol. 99(C), pages 194-209.
    10. Qing Ye & Bao-Xin Qian & Wei-Li Yin & Feng-Mei Wang & Tao Han, 2016. "Association between the HFE C282Y, H63D Polymorphisms and the Risks of Non-Alcoholic Fatty Liver Disease, Liver Cirrhosis and Hepatocellular Carcinoma: An Updated Systematic Review and Meta-Analysis o," PLOS ONE, Public Library of Science, vol. 11(9), pages 1-17, September.
    11. Bishal Mohindru & David Turner & Tracey Sach & Diana Bilton & Siobhan Carr & Olga Archangelidi & Arjun Bhadhuri & Jennifer A. Whitty, 2020. "Health State Utility Data in Cystic Fibrosis: A Systematic Review," PharmacoEconomics - Open, Springer, vol. 4(1), pages 13-25, March.
    12. Neal R. Haddaway & Matthew J. Page & Chris C. Pritchard & Luke A. McGuinness, 2022. "PRISMA2020: An R package and Shiny app for producing PRISMA 2020‐compliant flow diagrams, with interactivity for optimised digital transparency and Open Synthesis," Campbell Systematic Reviews, John Wiley & Sons, vol. 18(2), June.
    13. Ding Zhu & Mindan Wu & Yuan Cao & Shihua Lin & Nanxia Xuan & Chen Zhu & Wen Li & Huahao Shen, 2018. "Heated humidification did not improve compliance of positive airway pressure and subjective daytime sleepiness in obstructive sleep apnea syndrome: A meta-analysis," PLOS ONE, Public Library of Science, vol. 13(12), pages 1-16, December.
    14. Pelai, Ricardo & Hagerman, Shannon M. & Kozak, Robert, 2020. "Biotechnologies in agriculture and forestry: Governance insights from a comparative systematic review of barriers and recommendations," Forest Policy and Economics, Elsevier, vol. 117(C).
    15. Wesam Salah Alaloul & Muhammad Altaf & Muhammad Ali Musarat & Muhammad Faisal Javed & Amir Mosavi, 2021. "Systematic Review of Life Cycle Assessment and Life Cycle Cost Analysis for Pavement and a Case Study," Sustainability, MDPI, vol. 13(8), pages 1-38, April.
    16. Claudia Peters & Agnessa Kozak & Albert Nienhaus & Anja Schablon, 2020. "Risk of Occupational Latent Tuberculosis Infection among Health Personnel Measured by Interferon-Gamma Release Assays in Low Incidence Countries—A Systematic Review and Meta-Analysis," IJERPH, MDPI, vol. 17(2), pages 1-16, January.
    17. Sehee Kim & Mihyeon Park & Sukhee Ahn, 2022. "The Impact of Antepartum Depression and Postpartum Depression on Exclusive Breastfeeding: A Systematic Review and Meta-Analysis," Clinical Nursing Research, , vol. 31(5), pages 866-880, June.
    18. Habarurema Jean Baptiste & Yan Guang Cai & A. Y. M. Atiquil Islam & Nzabalirwa Wenceslas, 2022. "A Systematic Review of University Social Responsibility in Post-Conflict Societies: The Case of the Great Lakes Region of East Africa," Social Indicators Research: An International and Interdisciplinary Journal for Quality-of-Life Measurement, Springer, vol. 164(1), pages 439-475, November.
    19. Yafei Shen & Weide Shao, 2022. "Influence of Hybrid Pedagogical Models on Learning Outcomes in Physical Education: A Systematic Literature Review," IJERPH, MDPI, vol. 19(15), pages 1-16, August.
    20. Nicola Andreij Rieg & Birgitta Gatersleben & Ian Christie, 2021. "Organizational Change Management for Sustainability in Higher Education Institutions: A Systematic Quantitative Literature Review," Sustainability, MDPI, vol. 13(13), pages 1-18, June.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:sae:clnure:v:28:y:2019:i:1:p:30-51. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: SAGE Publications (email available below). General contact details of provider: .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.