To donate or not to donate? Future healthcare professionals’ opinions on biobanking of human biological material for research purposes | BMC Medical Ethics
Hewitt R, Watson P. Defining biobank. Biopreserv Biobank. 2013;11(5):309–15.
Annaratone L, De Palma G, Bonizzi G, Sapino A, Botti G, Berrino E, Mannelli C, Arcella P, Di Martino S, Steffan A, Daidone MG, Canzonieri V, Parodi B, Paradiso AV, Barberis M, Marchiò C, Alleanza Contro il Cancro (ACC) Pathology and Biobanking Working Group. Basic principles of biobanking: from biological samples to precision medicine for patients. Virchows Arch. 2021;479(2):233–46.
Argudo-Portal V, Domènech M. The reconfiguration of biobanks in Europe under the BBMRI-ERIC framework: towards global sharing nodes? Life Sci Soc Policy. 2020;16:9. https://doi.org/10.1186/s40504-020-00105-3.
De Souza YG, Greenspan JS. Biobanking past, present and future: responsibilities and benefits. AIDS. 2013;27(3):303–12.
Olson JE, Bielinski SJ, Ryu E, Winkler EM, Takahashi PY, Pathak J, Cerhan JR. Biobanks and personalized medicine. Clin Genet. 2014;86(1):50–5.
Kinkorová J. Biobanks in the era of personalized medicine: objectives, challenges, and innovation. EPMA J. 2016;7(1):4. https://doi.org/10.1186/s13167-016-0053-7.
Coppola L, Cianflone A, Grimaldi AM, Incoronato M, Bevilacqua P, Messina F, Baselice S, Soricelli A, Mirabelli P, Salvatore M. Biobanking in health care: evolution and future directions. J Transl Med. 2019;17(1):172. https://doi.org/10.1186/s12967-019-1922-3.
Hartman V, Matzke L, Watson PH. Biospecimen complexity and the evolution of biobanks. Biopreserv Biobank. 2019;17(3):264–70.
Yaghoobi H, Hosseini SA. History of the largest global biobanks, ethical challenges, registration, and biological samples ownership. J Public Health (Berlin). 2021. https://doi.org/10.1007/s10389-021-01504-2.
Park A. 10 ideas changing the world right now. Time Magazine; 2009. http://content.time.com/time/specials/packages/article/0,28804,1884779_1884782_1884766,00.html. Accessed 15 Dec 2022.
Pandya J. Biobanking is changing the world. Forbes; 2019. https://www.forbes.com/sites/cognitiveworld/2019/08/12/biobanking-is-changing-the-world/. Accessed 15 Dec 2022.
Strawbridge RJ, Ward J, Cullen B, Tunbridge EM, Hartz S, Bierut L, Horton A, Bailey MES, Graham N, Ferguson A, Lyall DM, Mackay D, Pidgeon LM, Cavanagh J, Pell JP, O’Donovan M, Escott-Price V, Harrison PJ, Smith DJ. Genome-wide analysis of self-reported risk-taking behaviour and cross-disorder genetic correlations in the UK Biobank cohort. Transl Psychiatry. 2018;8:39. https://doi.org/10.1038/s41398-017-0079-1.
Dennison CA, Legge SE, Bracher-Smith M, Menzies G, Escott-Price V, Smith DJ, Doherty AR, Owen MJ, O’Donovan MC, Walters JTR. Association of genetic liability for psychiatric disorders with accelerometer-assessed physical activity in the UK Biobank. PLoS One. 2021;16(3):e0249189. https://doi.org/10.1371/journal.pone.0249189.
Sewell MDE, Jiménez-Sánchez L, Shen X, Edmondson-Stait AJ, Green C, Adams MJ, Rifai OM, McIntosh AM, Lyall DM, Whalley HC, Lawrie SM. Associations between major psychiatric disorder polygenic risk scores and blood-based markers in UK biobank. Brain Behav Immun. 2021;97:32–41.
Matera-Witkiewicz A, Gleńska-Olender J, Uhrynowska-Tyszkiewicz I, Witoń M, Zagórska K, Ferdyn K, Laskowski M, Sitek P, Marciniak B, Pawlikowski J, Strapagiel D. Manual of Biobank quality management. Wrocław: Uniwersytet Medyczny im. Piastów Śląskich; 2023. https://doi.org/10.1007/978-3-031-12559-1.
International Society for Biological and Environmental Repositories. http://www.isber.org/. Accessed 17 June 2023.
Kinkorová J. Education for future biobankers – the state-of-the-art and outlook. EPMA J. 2021;12(1):15–25. https://doi.org/10.1007/s13167-021-00234-5.
Litton JE. Launch of an infrastructure for health research: BBMRI-ERIC. Biopreserv Biobank. 2018;16(3):233–41. https://doi.org/10.1089/bio.2018.0027.
Henderson MK, Matharoo-Ball B, Schacter B, Kozlakidis Z, Smits E, Törnwall O, Litton JE. Global biobank week: toward harmonization in biobanking. Biopreserv Biobank. 2017;15(6):491–3. https://doi.org/10.1089/bio.2017.29030.mkh.
European Biotech Week. https://biotechweek.org/events/. Accessed 18 June 2023.
Baldo C, Casareto L, Renieri A, Merla G, Garavaglia B, Goldwurm S, Pegoraro E, Moggio M, Mora M, Politano L, Sangiorgi L, Mazzotti R, Viotti V, Meloni I, Pellico MT, Barzaghi C, Wang CM, Monaco L, Filocamo M. The alliance between genetic biobanks and patient organisations: the experience of the telethon network of genetic biobanks. Orphanet J Rare Dis. 2016;11(1):142. https://doi.org/10.1186/s13023-016-0527-7.
Luna Puerta L, Kendall W, Davies B, Day S, Ward H. The reported impact of public involvement in biobanks: a scoping review. Health Expect. 2020;23(4):759–88. https://doi.org/10.1111/hex.13067.
Castellanos-Uribe M, Gormally E, Zhou H, Matzke E, Watson PH. Biobanking education. Biopreserv Biobank. 2020;18(1):1–3. https://doi.org/10.1089/bio.2019.29062.mjc.
O’Donoghue S, Byrne JA, Green C, Hill K, Kozlakidis Z, De Wilde A, Mullins P, Wiles KR. The experts speak on biobank education. Biopreserv Biobank. 2020;18(1):14–7. https://doi.org/10.1089/bio.2020.29064.sod.
Polska Sieć Biobanków. https://polskasiecbiobankow.pl/EN/home. Accessed 16 Dec 2022.
Witoń M, Strapagiel D, Gleńska-Olender J, Chróścicka A, Ferdyn K, Skokowski J, Kalinowski L, Pawlikowski J, Marciniak B, Pasterk M, Matera-Witkiewicz A, Kozera Ł. Organization of BBMRI.pl: the Polish biobanking network. Biopreserv Biobank. 2017;15(3):264–9.
Kozera Ł, Strapagiel D, Gleńska-Olender J, Chrościcka A, Ferdyn K, Skokowski J, Kalinowski L, Pawlikowski J, Marciniak B, Pasterk M, Matera-Witkiewicz A, Lewandowska-Szumieł M, Piast M, Witoń M. Biobankowanie ludzkiego materiału biologicznego dla celów naukowych w Polsce i w Europie. Stud Iurid. 2018;73:13–28.
Chróścicka A, Paluch A, Kozera Ł, Lewandowska-Szumieł M. The landscape of biobanks in Poland – characteristics of Polish biobanking units at the beginning of BBMRI.pl organization. J Tran Med. 2021;19(1):267. https://doi.org/10.1186/s12967-021-02926-y.
Krekora-Zając D. Legal aspects of biobanking HBS for scientific purposes in Poland. Stud Prawnicze. 2019;4(220):165–84.
Pawlikowski J. Biobankowanie ludzkiego materiału biologicznego do celów badań naukowych – aspekty organizacyjne, etyczne, prawne i społeczne. Lublin: Wydawnictwo Uniwersytetu Medycznego w Lublinie; 2013.
Pawlikowski J, Wiechetek M, Majchrowska A. Associations between the willingness to donate samples to biobanks and selected psychological variables. Int J Env Res Public Health. 2022;19(5):2552. https://doi.org/10.3390/ijerph19052552.
Majchrowska A, Wiechetek M, Domaradzki J, Pawlikowski J. Social differentiation of the perception and human tissues donation for research purposes. Front Genet. 2022;13:989252. https://doi.org/10.3389/fgene.2022.989252.
Domaradzki J, Pawlikowski J. Public attitudes toward biobanking of human biological material for research purposes: a literature review. Int J Environ Res Public Health. 2019;16(12):2209. https://doi.org/10.3390/ijerph16122209.
Tomlinson T. Respecting donors to biobank research. Hastings Cent Rep. 2013;43(1):41–7.
Mitchell D, et al. Biobanking from the patient perspective. Res Involv Engagem. 2015;1:4. https://doi.org/10.1186/s40900-015-0001-z.
Sanner J, Yu E, Nomie K. Nursing and biobanking. Adv Exp Med Biol. 2015;864:157–63.
Caixeiro N, Byun H, Descallar J, Levesque J, de Souza P, Lee CS. Health professionals’ opinions on supporting a cancer biobank: identification of barriers to combat biobanking pitfalls. Eur J Hum Genet. 2016;24(5):626–32.
Persaud A, Bonham VL. The role of the health care provider in building trust between patients and precision medicine research programs. Am J Bioeth. 2018;18(4):26–8.
Lhousni S, Boulouiz R, Abda N, Tajir M, Bellaoui M, Ouarzane M. Assessment of knowledge, attitudes and support of health professionals towards biobanks in eastern Morocco. Open J Epidemiol. 2019;9:191–201.
Miller L, Rosenzweig M. Biobanking: how oncology nurses can contribute to its use. Clin J Oncol Nurs. 2021;25(6):637–9.
Chróścicka A, Paluch A, Kalaszczyńska I, Szabłowska-Gadomska I. Biobank personnel – the key to its success. Alternat Lab Anim. 2022;50(4):275–81.
Leiman DA, Lorenzi NM, Wyatt JC, Doney AS, Rosenbloom ST. US and Scottish health professionals’ attitudes toward DNA biobanking. J Am Med Inform Assoc. 2008;15:357–62.
Kintossou AK, et al. Study of laboratory staff’ knowledge of biobanking in Côte d’Ivoire. BMC Med Ethics. 2020;21(1):88. https://doi.org/10.1186/s12910-020-00533-y.
Abdelhafiz AS, Sultan EA, Ziady HH, Sayed DM, Khairy WA. Knowledge, perceptions and attitude of Egyptian physicians towards biobanking issues. PLoS One. 2021;16(3):e0248401. https://doi.org/10.1371/journal.pone.0248401.
Krajewska-Kułak E, Kułak W, Van Damme-Ostapowicz K, Rozwadowska E, Lewko J. Students opinions on DNA banking. Preliminary report. Prog Health Sci. 2011;1(2):102–5.
Tozzo P, Fassina A, Caenazzo L. Young people’s awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students. Life Sci Soc Policy. 2017;13:9. https://doi.org/10.1186/s40504-017-0055-9.
Ziady H, El Zeiny N, Sultan EA, El Sharef Y. Assessment of medical students’ knowledge and attitude towards biobanks and biospecimens donation. J Int Med Res. 2017;38(1):1–9.
Khatib F, Jibrin D, Al-Majali J, Elhussieni M, Almasaid S, Ahram M. Views of university students in Jordan towards biobanking. BMC Med Ethics. 2021;22(1):152. https://doi.org/10.1186/s12910-021-00719-y.
Eurostat, Brancato G, Macchia S, Murgia M, Signore M, Simeoni G, Blanke K, Körner T, Nimmergut A, Lima P, Paulino R, Hoffmeyer-Zlotnik JHP. The handbook of recommended practices for questionnaire development and testing in the European statistical system. 2005. https://unstats.un.org/unsd/EconStatKB/KnowledgebaseArticle10364.aspx. Accessed 15 Dec 2022.
Lipworth W, Forsyth R, Kerridge I. Tissue donation to biobanks: a review of sociological studies. Sociol Health Illn. 2011;33(5):792–811. https://doi.org/10.1111/j.1467-9566.2011.01342.x.
Nobile H, Vermeulen E, Thys K, Bergmann MM, Borry P. Why do participants enroll in population biobank studies? A systematic literature review. Expert Rev Mol Diagn. 2013;13(1):35–47. https://doi.org/10.1586/erm.12.116.
Shabani M, Bezuidenhout L, Borry P. Attitudes of research participants and the general public towards genomic data sharing: a systematic literature review. Expert Rev Mol Diagn. 2014;14(8):1053–65. https://doi.org/10.1586/14737159.2014.961917.
D’Abramo F, Schildmann J, Vollmann J. Research participants’ perceptions and views on consent for biobank research: a review of empirical data and ethical analysis. BMC Med Ethics. 2015;16:60. https://doi.org/10.1186/s12910-015-0053-5.
Sawicka-Gutaj N, Gruszczyński D, Guzik P, Mostowska A, Walkowiak J. Publication ethics of human studies in the light of the Declaration of Helsinki – a mini-review. JMS. 2022;91:e700. https://doi.org/10.20883/medical.e700.
Pawlikowski J, Sak J, Marczewski K. The analysis of the ethical, organizational and legal aspects of Polish biobanks activity. Eur J Public Health. 2010;20(6):707–10.
Pawlikowski J, Sak J, Marczewski K. Biobank research and ethics: the problem of informed consent in Polish biobanks. Arch Med Sci. 2011;7(5):896–901.
Matera-Witkiewicz A, Krupińska M, Sitek P, Laskowski M, Zagórska K, Gleńska-Olender J. Quality Management in Polish Biobanking Network – current status before the implementation of unified and harmonized integrated quality management system. Front Med. 2022;8:780294. https://doi.org/10.3389/fmed.2021.780294.
Hoeyer KL. Size matters: the ethical, legal and social issues surrounding large-scale genetic biobank initiatives. Norsk Epidemiologi. 2012;21(2):211–20.
Bledsoe MJ. Ethical, legal and social issues of biobanking: past, present, and future. Biopreserv Biobank. 2017;15(2):142–7.
Caulfield T, Murdoch B. Genes, cells, and biobanks: yes, there’s still a consent problem. PLoS Biol. 2017;15(7):e2002654. https://doi.org/10.1371/journal.pbio.2002654.
Domaradzki J. Geneticization and biobanking. Pol Sociol Rev. 2019;1(205):103–17.
Ministerstwo Edukacji i Nauki, Biobanki łączą się w sieć. 2020. https://www.gov.pl/web/edukacja-i-nauka/biobanki-lacza-sie-w-siec. Accessed 15 Dec 2022.
Ahsan M, Rana ZA, Ali M, Anwer K. Assessment of knowledge, concerns and support of physicians towards biobanks in Pakistan, and their willingness to donate. Sci Prog Res. 2021;1(4):206–68. https://doi.org/10.52152/spr/2021.152.
Buhmeida A, Assidi M, Alyazidi O, Olwi DI, Althuwaylimi A, Yahya FM, Arfaoui L, Merdad L, Abuzenadah AM. Assessment of biobanking knowledge and attitudes towards biospecimen donation among healthcare providers in Saudi Arabia. Int J Environ Res Public Health. 2022;19(19):11872. https://doi.org/10.3390/ijerph191911872.
Serrano NC, Guio-Mahecha E, Becerra-Bayona S, Luna-González ML, Quintero-Lesmes DC. The perception of different social agents in Colombia regarding biobanks for research purposes. Biomedica. 2018;38(4):569–76.
Wyld L, Smith S, Hawkins NJ, Long J, Ward RL. Introducing research initiatives into healthcare: what do doctors think? Biopreserv Biobank. 2014;12(2):91–8.
Barazzetti G, Cavalli S, Benaroyo L, Kaufmann A. “Still rather hazy at present”: citizens’ and physicians’ views on returning results from biobank research using broad consent. Genet Test Mol Biomarkers. 2017;21(3):159–65.
Gaskell G, Gottweis H. Biobanks need publicity. Nature. 2011;471(7337):159–60. https://doi.org/10.1038/471159a.
Gaskell G, Gottweis H, Starkbaum J, Gerber MM, Broerse J, Gottweis U, Hobbs A, Helén I, Paschou M, Snell K, Soulier A. Publics and biobanks: Pan-European diversity and the challenge of responsible innovation. Eur J Hum Genet. 2013;21(1):14–20. https://doi.org/10.1038/ejhg.2012.104.
Dagher G. Quality matters: International standards for biobanking. Cell Prolif. 2022;55(8):e13282. https://doi.org/10.1111/cpr.13282.
Goisauf M, Martin G, Bentzen HB, Budin-Ljøsne I, Ursin L, Durnová A, Leitsalu L, Smith K, Casati S, Lavitrano M, Mascalzoni D, Boeckhout M, Mayrhofer MT. Data in question: a survey of European biobank professionals on ethical, legal and societal challenges of biobank research. PLoS One. 2019;14(9):e0221496. https://doi.org/10.1371/journal.pone.0226149.
