Attitudes of oncology patients’ towards biospecimen donation for biobank research - Publication - Bridge of Knowledge

Your account

login

Search

Attitudes of oncology patients’ towards biospecimen donation for biobank research

Abstract

Background

Since the biological material that remains after diagnostic and therapeutic procedures plays crucial role in biobank research, this study aims to explore cancer patients’ views on the donation of biospecimens for research purposes.

Methods

548 oncology patients from two hospitals with oncology treatment units in Poznan, Poland, completed an anonymous, self-administered pen-and-paper questionnaire.

Results

Although only 43.4% of patients had heard of biobanks, 93.1% declared themselves willing to donate. 71.1% of patients believed that doctors should ask patients to donate, and 60.9% that this should be done before the medical procedure. While 65% of patients were willing to donate any type of tissue that remained after a medical procedure, blood, saliva and hair were indicated most frequently. 40.5% of patients would donate their entire body after death and 21% would refuse. Patients’ support for biobanks was mainly driven by the desire to support science, help advance cancer research and altruism. Some respondents expected health information or medical treatment. The most common barriers for donation were physical distance, repeated examinations, concerns over the privacy and confidentiality of data and the commercial or unethical use of samples. Patients’ attitudes toward biobank donation seemed to be associated with age, education level, declared religiousness, a family history of genetically determined diseases and whether they were a blood donor.

Conclusions

Although cancer patients’ lack of biobank awareness had no effect on their affirmative attitudes towards biobank research, there is a need to further increase patients’ support and overcome possible barriers that might hinder their willingness to donate.

Citations

Author (1)

Cite as

Full text

download paper
downloaded 6 times
Publication version
Submitted Version
License
Creative Commons: CC-BY-NC-ND open in new tab

Keywords

Details

Category:
Magazine publication
Type:
Magazine publication
Published in:
BMC CANCER no. 24,
ISSN: 1471-2407
Title of issue:
BMC Cancer
Publication year:
2024
Bibliographic description:
https://bmccancer.biomedcentral.com/articles/10.1186/s12885-024-12145-5
DOI:
Digital Object Identifier (open in new tab) https://doi.org/10.1186/s12885-024-12145-5
Bibliography: test
  1. Mendy M, Caboux E, Lawlor RT, Wright J, Wild CP. Common Minimum Techni- cal standards and protocols for Biobanks dedicated to Cancer Research. Lyon (FR): International Agency for Research on Cancer; 2017. open in new tab
  2. Korhan P, Tercan Avcı S, Yılmaz Y, Öztemur Islakoğlu Y, Atabey N. Role of biobanks for cancer research and precision medicine in hepatocellular car- cinoma. J Gastrointest Cancer. 2021;52(4):1232-47. https://doi.org/10.1007/ s12029-021-00759-y. open in new tab
  3. Hewitt R, Watson P. Defining biobank. Biopreserv Biobank. 2013;11(5):309-15. https://doi.org/10.1089/bio.2013.0042. open in new tab
  4. Kinkorová J. Biobanks in the era of personalized medicine: objectives, chal- lenges, and innovation: overview. EPMA J. 2015;7:4. https://doi.org/10.1186/ s13167-016-0053-7. open in new tab
  5. Watson PH, Hewitt RE, Catchpoole DR, Grizzle WE. Biobank: what's in a name? Biopreserv Biobank. 2019;17(3):204-8. https://doi.org/10.1089/ bio.2019.29053.mjb. open in new tab
  6. 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 open in new tab
  7. Biobanking Working Group. Basic principles of biobanking: from biological samples to precision medicine for patients. Virchows Arch. 2021;479(2):233- 46. https://doi.org/10.1007/s00428-021-03151-0. open in new tab
  8. Liu A, Pollard K. Biobanking for personalized medicine. Adv Exp Med Biol. 2015;864:55-68. https://doi.org/10.1007/978-3-319-20579-3. open in new tab
  9. 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. open in new tab
  10. Matzke LA, Watson PH. Biobanking for cancer biomarker research: issues and solutions. Biomark Insights. 2020;15:1177271920965522. https://doi. org/10.1177/1177271920965522. open in new tab
  11. Główny Urząd Statystyczny. Umieralność w 2021 roku. Zgony według przyczyn-dane wstępne. 2023. file:///C:/Users/Dell/Desktop/umieralnosc_i_ zgony_wedlug_przyczyn_w_2021_roku.pdf Accessed 10 Oct 2023.
  12. Ministerstwo Zdrowia. Narodowa Strategia Onkologiczna. 2020. https://www. gov.pl/web/zdrowie/narodowa-strategia-onkologiczna-nso. Accessed 10 Oct 2023.
  13. Witoń M, Strapagiel D, Gleńska-Olender J, Chróścicka A, Ferdyn K, Skokowski J, Kalinowski L, Pawlikowski, Marciniak B, Pasterk M, Matera-Witkiewicz A, Kozera Ł. Organization of BBMRI.pl: the Polish Biobanking Network. Biopre- serv Biobank. 2017;15(3):264-9. https://doi.org/10.1089/bio.2016.0091. open in new tab
  14. 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. open in new tab
  15. Krekora-Zając D. Legal aspects of biobanking HBS for scientific purposes in Poland. Studia Prawnicze. 2019;4(220):165-84. https://doi.org/10.37232/ sp.2019.4.7. open in new tab
  16. Chalmers D, Nicol D, Kaye J, Bell J, Campbell AV, Ho CW, Kato K, Minari J, Ho CH, Mitchell C, Molnár-Gábor F, Otlowski M, Thiel D, Fullerton SM, Whitton T. Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era. BMC Med Ethics. 2016;17(1):39. https://doi. org/10.1186/s12910-016-0124-2. open in new tab
  17. Bledsoe MJ. Ethical, legal and social issues of biobanking: past, present, and future. Biopreserv Biobank. 2017;15(2):142-7. https://doi.org/10.1089/ bio.2017.0030. open in new tab
  18. 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. open in new tab
  19. Domaradzki J. Geneticization and biobanking. Pol Soc Rev. 2019;1(205):103- 17. https://doi.org/10.26412/psr205.07. open in new tab
  20. Tzortzatou-Nanopoulou O, Akyüz K, Goisauf M, Kozera Ł, Mežinska S, Th Mayrhofer M, Slokenberga S, Reichel J, Croxton T, Ziaka A, Makri M. Ethical, legal, and social implications in research biobanking: a checklist for navigat- ing complexity. Dev World Bioeth. 2023. https://doi.org/10.1111/dewb.12411. open in new tab
  21. Pawlikowska J, Pawlikowski J, Krekora-Zając D. Biobanking of human biological material and the principle of noncommercialisation of the human body and its parts. Bioethics. 2023;37(2):154-64. https://doi.org/10.1111/ bioe.13127. open in new tab
  22. International Society for Biological and Environmental Repositories. http:// www.isber.org/ Accessed 1 March 2024. open in new tab
  23. Ferdyn K, Gleńska-Olender J, Witoń M, Zagórska K, Kozera Ł, Chróścicka A, Matera-Witkiewicz A. Quality Management System in the BBMRI.pl Consortium: Status before the formation of the Polish Biobanking Network. Biopreserv Biobank. 2019;17(5):401-9. https://doi.org/10.1089/bio.2018.0127. open in new tab
  24. 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. open in new tab
  25. Matera-Witkiewicz A, Gleńsk1-Olender J, Zagórska K, Uhrynowskiej-Tyszkie- wicz I, Witoń M. Standardy jakości dla biobanków polskich v. 2.00. Uniwer- sytet Medyczny im. Wrocław: Piastów Śląskich we Wrocławiu; 2021.
  26. Matera-Witkiewicz A, Zagorska K, Kozlakidis Z, Glenska-Olender J. Letter to the editor: creation of National guides in the Frame of International standards and Best practices in Biobanking: Quality standards for Polish Biobanks Handbook. Biopreserv Biobank. 2022;20(6):575-6. https://doi.org/10.1089/ bio.2021.0111. open in new tab
  27. Liu A. Developing an institutional cancer biorepository for personalized medicine. Clin Biochem. 2014;47(4-5):293-9. https://doi.org/10.1016/j. clinbiochem.2013.12.015. open in new tab
  28. Müller, Dagher G, Loibner M, Stumptner C, Kungl P, Zatloukal K. Biobanks for life sciences and personalized medicine: importance of standardiza- tion, biosafety, biosecurity, and data management. Curr Opin Biotechnol. 2020;65:45-51. https://doi.org/10.1016/j.copbio.2019.12.004. open in new tab
  29. Pentz RD, Billot L, Wendler D. Research on stored biological samples: views of African American and white American cancer patients. Am J Med Genet A. 2006;140(7):733-9. https://doi.org/10.1002/ajmg.a.31154. open in new tab
  30. Master Z, Claudio JO, Rachu C, Wangm JCY, Minden MD, Caulfield T. Cancer patient perceptions on the ethical and legal issues related to biobanking. BMC Med Genomics. 2013;6(1):8. https://doi.org/10.1186/1755-8794-6-8. open in new tab
  31. Lhousni S, Daoudi F, Belmokhtar I, Belmokhtar KY, Abda N, Boulouiz R, Tajir M, Bellaoui M, Ouarzane M. Patients' knowledge and attitude toward biobanks in Eastern Morocco. Biopreserv Biobank. 2020;18(3):189-95. https://doi. org/10.1089/bio.2019.0047. open in new tab
  32. 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. Springer Cham; 2023. https://doi.org/10.1007/978-3-031-12559-1. open in new tab
  33. Helft PR, Champion VL, Eckles R, Johnson CS, Meslin EM. Cancer patients' attitudes toward future research uses of stored human biological materi- als. J Empir Res Hum Res Ethics. 2007;2(3):15-22. https://doi.org/10.1525/ jer.2007.2.3.15. open in new tab
  34. Dang JH, Rodriguez EM, Luque JS, Erwin DO, Meade CD, Chen MS Jr. Engaging diverse populations about biospecimen donation for cancer research. J Community Genet. 2014;5(4):313-27. https://doi.org/10.1007/ s12687-014-0186-0. open in new tab
  35. Moorcraft SY, Marriott C, Peckitt C, Cunningham D, Chau I, Starling N, Watkins D, Rao S. Patients' willingness to participate in clinical trials and their views on aspects of cancer research: results of a prospective patient survey. Trials. 2016;9:17. https://doi.org/10.1186/s13063-015-1105-3. open in new tab
  36. Drake BF, Brown K, McGowan LD, Haslag-Minoff J, Kaphingst K. Secondary consent to biospecimen use in a prostate cancer biorepository. BMC Res Notes. 2016;9(1):346. https://doi.org/10.1186/s13104-016-2159-3. open in new tab
  37. Labib RM, Hassanain O, Alaa M, Ahmed S, Abou El-Naga S. Planning today for tomorrow's research: analysis of factors influencing participation in a pediatric cancer research biorepository. Front Oncol. 2018;7:324. https://doi. org/10.3389/fonc.2017.00324. open in new tab
  38. Mathews DJH, Rabin JT, Quain K, Campbell E, Collyar D, Hlubocky FJ, Isakoff S, Peppercorn J. Secondary use of patient tissue in cancer biobanks. Oncologist. 2019;24(12):1577-83. https://doi.org/10.1634/theoncologist.2018-0376. open in new tab
  39. Peppercorn J, Campbell E, Isakoff S, Horick NK, Rabin J, Quain K, Sequist LV, Bardia A, Collyar D, Hlubocky F, Mathews D. Patient preferences for use of archived biospecimens from oncology trials when adequacy of informed consent is unclear. Oncologist. 2020;25(1):78-86. https://doi.org/10.1634/ theoncologist.2019-0365. open in new tab
  40. Gao H, Cao B, Dang N, Gu S, Xu M, Ji B, Shi Y, Liu S, Wang C. Comparison of factors influencing the willingness to donate biospecimens among guardians of children with cancer and adult cancer patients. Cancer Med. 2022;11(6):1524-34. https://doi.org/10.1002/cam4.4544. open in new tab
  41. Braun KL, Tsark JU, Powers A, Croom K, Kim R, Gachupin FC, Morris P. Cancer patient perceptions about biobanking and preferred timing of consent. Bio- preserv Biobank. 2014;12(2):106-12. https://doi.org/10.1089/bio.2013.0083. open in new tab
  42. Bryant J, Sanson-Fisher R, Fradgley E, Regan T, Hobden B, Ackland SP. Oncology patients overwhelmingly support tissue banking. BMC Cancer. 2015;15:413. https://doi.org/10.1186/s12885-015-1416-5. open in new tab
  43. Yip S, Fleming J, Shepherd HL, Walczak A, Clark J, Butow P. As Long as you ask: a qualitative study of biobanking consent-oncology patients' and health care professionals' attitudes, motivations, and experiences-the B-PPAE study. Oncologist. 2019;24(6):844-56. https://doi.org/10.1634/ theoncologist.2018-0233. open in new tab
  44. He N, Guo Y, He M, Qiang W, Li H. Attitudes and perceptions of cancer patients toward biospecimen donation for cancer research: a cross-sectional survey among Chinese cancer patients. Biopreserv Biobank. 2017;15(4):366- 74. https://doi.org/10.1089/bio.2016.0079. open in new tab
  45. Morrell B, Lipworth W, Axler R, Kerridge I, Little M. Cancer as rubbish: donation of tumor tissue for research. Qual Health Res. 2011;21(1):75-84. https://doi. org/10.1177/1049732310373753. open in new tab
  46. Lee CI, Bassett LW, Leng M, Maliski SL, Pezeshki BB, Wells CJ, Mangione CM, Naeim A. Patients' willingness to participate in a breast cancer biobank at screening mammogram. Breast Cancer Res Treat. 2012;136(3):899-906. https://doi.org/10.1007/s10549-012-2324-x. open in new tab
  47. Cervo S, Rovina J, Talamini R, Perin T, Canzonieri V, De Paoli P, Steffan A. An effective multisource informed consent procedure for research and clinical practice: an observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank. BMC Med Ethics. 2013;14:30. https://doi.org/10.1186/1472-6939-14-30. open in new tab
  48. Pellegrini I, Chabannon C, Mancini J, Viret F, Vey N, Julian-Reynier C. Contribut- ing to research via biobanks: what it means to cancer patients. Health Expect. 2014;17(4):523-33. https://doi.org/10.1111/j.1369-7625.2012.00781.x. open in new tab
  49. Hathaway CA, Siegel EM, Chung CH, Pabbathi S, Vidrine J, Vadaparampil S, Tworoger SS. Utilizing a large-scale biobanking registry to assess patient priorities and preferences for cancer research and education. PLoS ONE. 2021;16(2):e0246686. https://doi.org/10.1371/journal.pone.0246686. open in new tab
  50. Pawlikowski J. Biobankowanie ludzkiego materiału biologicznego dla celów badań naukowych-aspekty organizacyjne, etyczne, prawne i społeczne. Lublin: Wydawnictwo Uniwersytetu Medycznego w Lublinie; 2013.
  51. Pawlikowski J, Wiechetek M, Majchrowska A. Associations between the willingness to donate samples to biobanks and selected psychological vari- ables. Int J Env Res Public Health. 2022;19(5):2552. https://doi.org/10.3390/ ijerph19052552. open in new tab
  52. Majchrowska A, Wiechetek M, Domaradzki J, Pawlikowski J. Social differentia- tion of the perception and human tissues donation for research purposes. Front Genet. 2022;13:989252. https://doi.org/10.3389/fgene.2022.989252. open in new tab
  53. Domaradzki J, Czekajewska J, Walkowiak D. To donate or not to donate? Future healthcare professionals' opinions on biobanking of human biological material for research purposes. BMC Med Ethics. 2023;24(1):53. https://doi. org/10.1186/s12910-023-00930-z. open in new tab
  54. Domaradzki J, Walkowiak D. When biobanks meet religion: Association between religiosity and attitudes of Polish medical students toward biobank- ing of human biological material for research purposes. J Relig Health. 2023. https://doi.org/10.1007/s10943-023-01932-2. open in new tab
  55. Pronicki Ł, Czech M, Gujski M, Boguszewska ND. Awareness, attitudes and willingness to donate biological samples to a biobank: a survey of a repre- sentative sample of Polish citizens. Healthcare. 2023;11(20):2714. https://doi. org/10.3390/healthcare11202714. open in new tab
  56. 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. file:///C:/Users/user/Desktop/ RPSQDET27062006.pdf. Accessed 15 Oct 2023. open in new tab
  57. Sawicka-Gutaj N, Gruszczyński D, Guzik P, Mostowska A, Walkowiak J. Publica- tion ethics of human studies in the light of the declaration of Helsinki-a mini-review. J Med Sci. 2022;91(e700). https://doi.org/10.20883/medical.e700. open in new tab
  58. Simon MA, Tom LS, Dong X. Knowledge and beliefs about biospecimen research among Chinese older women in Chicago's Chinatown. J Gerontol Biol Sci Med Sci. 2017;72(suppl1):S41-9. https://doi.org/10.1093/gerona/ glw333. open in new tab
  59. Boise L, Hinton L, Rosen HJ, Ruhl MC, Dodge H, Mattek N, Albert M, Denny A, Grill JD, Hughes T, Lingler JH, Morhardt D, Parfitt F, Peterson-Hazan S, Pop V, Rose T, Shah RC. Willingness to be a brain donor: a survey of research volunteers from 4 racial/ethnic groups. Alzheimer Dis Assoc Disord. 2017;31(2):135-40. https://doi.org/10.1097/WAD.0000000000000174. open in new tab
  60. Domaradzki J, Walkowiak MP, Walkowiak D. Cluster donation: how medical students' bound certain types of tissues and biomedical research and how it affects their willingness to donate. Healthcare. 2023;11(19):2636. https://doi. org/10.3390/healthcare11192636. open in new tab
  61. Czekajewska JM. Organ transplant in present-day Japan: reasons behind low numbers of deceased donors. Diametros. 2021;18(70):2-25. https://doi. org/10.33392/diam.1630. open in new tab
  62. Chojnacka-Szawłowska G, Kościelak R, Karasiewicz K, Majkowicz M, Kozaka J. Delays in seeking cancer diagnosis in relations to beliefs about the cur- ability of cancer in patients with different disease locations. Psychol Health. 2013;28(2):154-70. https://doi.org/10.1080/08870446.2012.700056. open in new tab
  63. Chojnacka-Szawłowska G, Majkowicz M, Basiński K, Zdun-Ryżewska A, Wasilewko I, Pankiewicz P. Knowledge of cancer symptoms and anxiety affect patient delay in seeking diagnosis in patients with heterogeneous cancer locations. Curr Probl Cancer. 2017;41(1):64-70. https://doi.org/10.1016/j. currproblcancer.2016.10.001. open in new tab
  64. Rabinowitz T, Peirson R. Nothing is wrong, doctor: understanding and man- aging denial in patients with cancer. Cancer Invest. 2006;24(1):68-76. https:// doi.org/10.1080/07357900500449678. open in new tab
  65. Wendler D, Emanuel E. The debate over research on stored biological samples: what do sources think? Arch Intern Med. 2002;162:1457-62. https:// doi.org/10.1001/archinte.162.13.1457. open in new tab
  66. Baer AR, Smith ML, Bendell JC. Donating tissue for research: patient and pro- vider perspectives. J Oncol Pract. 2011;7(5):334-7. https://doi.org/10.1200/ JOP.2011.000399. open in new tab
  67. Wienroth M, Pearce C, McKevitt C. Research campaigns in the UK national health service: patient recruitment and questions of valuation. Sociol Health Ill. 2019;41(7):1444-61. https://doi.org/10.1111/1467-9566.12957. open in new tab
  68. Meitern M, Hansson S. Persuasive appeals in genetic biobank recruitment campaigns: Social and ethical implications. J Empir Res Hum Res Ethics. 2023;18(4):284-29. https://doi.org/10.1177/15562646231181028. open in new tab
  69. Publisher's Note open in new tab
  70. Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. open in new tab
Verified by:
No verification

seen 11 times

Recommended for you

To donate or not to donate? Future healthcare professionals’ opinions on biobanking of human biological material for research purposes

2023

Support for research biobanks among medical students in the Republic of Kazakhstan

2024

When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes

2023

Cluster donation: How medical students bound certain types of tissues and biomedical research and how it affects their willingness to donate.

2023
Meta Tags