Social Differentiation of the Perception and Human Tissues Donation for Research Purposes. - Publication - Bridge of Knowledge

Search

Social Differentiation of the Perception and Human Tissues Donation for Research Purposes.

Abstract

The willingness to donate human biological material for research purposes is shaped by socio-cultural factors; however, there is a lack of studies analysing the social perception of different human tissues, which may affect such willingness. This study aimed to distinguish different sociocultural categories of human tissues and types of potential donors based on their willingness to donate material. Quantitative research was conducted on a sample of 1,100 adult Poles representative in terms of sex, place of residence and education. According to the study, people were most willing to donate urine (73.9%), blood (69.7%), hair and tears (69.6%) and the least willing to donate post-mortem brain fragments (20%), sperm (males; 36.4%) and egg cells (females; 39.6%). A factor analysis revealed four sociocultural categories of donated tissues: irrelevant, redundant, ordinary and sensitive. Based on these
sociocultural categories of tissues, four types of donors were identified: reluctant, highly cooperative, average cooperative and selectively cooperative. The willingness to donate human samples for research is shaped by the sociocultural perception of different body parts and tissues. The lower the sense of “personal relationship” with a specific type of tissue, organ or part of the body, the higher the motivation to donate such biological material for research purposes. Additionally, the willingness to donate is mostly shaped by social trust in physicians and scientists, and potential donors’ engagement in charity activities.

Citations

Author (1)

Cite as

Full text

download paper
downloaded 16 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:
Frontiers in Genetics no. 13,
ISSN: 1664-8021
Title of issue:
Frontiers in Genentics
Publication year:
2022
DOI:
Digital Object Identifier (open in new tab) http://doi.org/10.3389/fgene.2022.989252
Bibliography: test
  1. Abu Farha, R., Alzoubi, K. H., Khabour, O. F., and Mukattash, T. L. (2020).
  2. Factors influencing public knowledge and willingness to participate in biomedical research in Jordan: A national survey. Patient prefer. Adherence 14, 1373-1379. doi:10.2147/PPA.S261903 open in new tab
  3. Ahram, M., Othman, A., Shahrouri, M., and Mustafa, E. (2014). Factors influencing public participation in biobanking. Eur. J. Hum. Genet. 22 (4), 445-451. doi:10.1038/ejhg.2013.174 open in new tab
  4. Ahram, M., Othman, A., and Shahrouri, M. (2012). Public perception towards biobanking in Jordan. Biopreserv. Biobank. 10 (4), 361-365. doi:10.1089/bio.2012.0010 open in new tab
  5. Aramoana, J., and Koea, J. (2020). An integrative review of the barriers to indigenous peoples participation in biobanking and genomic research. JCO Glob. open in new tab
  6. Oncol. 6, 83-91. doi:10.1200/JGO.18.00156 open in new tab
  7. Ashrafian, H. (2007). The science and culture of the heart. Lancet 370 (9587), 557-558. doi:10.1016/S0140-6736(07)61276-8 open in new tab
  8. Boise, L., Hinton, L., Rosen, H, J., Ruhl, M. C., Dodge, H., Mattek, N., et al. (2017). open in new tab
  9. Willingness to be a brain donor: A survey of research volunteers from 4 racial/ethnic groups. Alzheimer Dis. Assoc. Disord. 31 (2), 135-140. doi:10.1097/WAD. open in new tab
  10. Brall, C., Berlin, C., Zwahlen, M., Ormond, K. E., Egger, M., and Vayena, E. (2021). Public willingness to participate in personalized health research and biobanking: A large-scale Swiss survey. PLoS One 16 (4), e0249141. doi:10.1371/ journal.pone.0249141 open in new tab
  11. Dang, J. H., Rodriguez, E. M., Luque, J. S., Erwin, D. O., Meade, C. D., and Chen, M. S., Jr (2014). Engaging diverse populations about biospecimen donation for cancer research. J. Community Genet. 5 (4), 313-327. doi:10.1007/s12687-014- 0186-0 open in new tab
  12. Davis, T. C., Arnold, C. L., Mills, G., and Miele, L. (2019). A qualitative study exploring barriers and facilitators of enrolling underrepresented populations in clinical trials and biobanking. Front. Cell. Dev. Biol. 7, 74. doi:10.3389/fcell.2019. 00074 open in new tab
  13. de Souza Dourado, C., Fustinoni, S. M., Schirmer, J., and Brandão-Souza, C.
  14. Body, culture and meaning. J. Hum. Growth Dev. 28 (2), 206-212. doi:10. 7322/jhgd.147240 open in new tab
  15. De Vries, R. G., Tomlinson, T., Kim, H. M., Krenz, C. D., Ryan, K. A., Lehpamer, N., et al. (2016b). The moral concerns of biobank donors: The effect of non-welfare interests on willingness to donate. Life Sci. Soc. Policy 12, 3. doi:10.1186/s40504-016-0036-4 open in new tab
  16. De Vries, R. G., Tomlinson, T., Kim, H. M., Krenz, C., Haggerty, D., Ryan, K. A., et al. (2016a). Understanding the public's reservations about broad consent and study-by-study consent for donations to a biobank: Results of a national survey. PLoS One 11 (7), e0159113. doi:10.1371/journal.pone.0159113 open in new tab
  17. Domaradzki, J., and Pawlikowski, J. (2019). Public attitudes toward biobanking of human biological material for research purposes: A literature review. Int. J. Environ. Res. Public Health 16, 2209. doi:10.3390/ijerph16122209 open in new tab
  18. Friedman, D. B., Foster, C., Bergeron, C. D., Tanner, A., and Kim, S. H. (2015). A qualitative study of recruitment barriers, motivators, and community-based strategies for increasing clinical trials participation among rural and urban populations. Am. J. Health Promot. 29 (5), 332-338. doi:10.4278/ajhp.130514- QUAL-247 open in new tab
  19. Gaskell, G., Gottweis, H., Starkbaum, J., Gerber, M. M., Broerse, J., Gottweis, U., et al. (2013). Publics and biobanks: Pan-European diversity and the challenge of responsible innovation. Eur. J. Hum. Genet. 21 (1), 14-20. doi:10.1038/ejhg. open in new tab
  20. Gilchrist, P. T., Masser, B. M., Horsley, K., and Ditto, B. (2019). Predicting blood donation intention: The importance of fear. Transfusion 59 (12), 3666-3673. doi:10. 1111/trf.15554 open in new tab
  21. Goodson, M. L., and Vernon, B. G. (2004). A study of public opinion on the use of tissue samples from living subjects for clinical research. J. Clin. Pathology 57 (2), 135-138. doi:10.1136/jcp.2003.9886 open in new tab
  22. Gross, D., Schmitz, A. A., Vonk, R., Igney, F. H., Döcke, W. D., Schoepe, S., et al. (2011). Willingness to donate human samples for establishing a dermatology Frontiers in Genetics frontiersin.org research biobank: Results of a survey. Biopreserv. Biobank. 9 (3), 265-271. doi:10. 1089/bio.2011.0009 open in new tab
  23. Hawkins, A. K., and O'Doherty, K. (2010). Biobank governance: A lesson in trust. New Genet. Soc. 29 (3), 311-327. doi:10.1080/14636778.2010.507487 open in new tab
  24. Heredia, N. I., Krasny, S., Strong, L. L., Von Hatten, L., Nguyen, L., Reininger, B. open in new tab
  25. M., et al. (2017). Community perceptions of biobanking participation: A qualitative study among Mexican-Americans in three Texas cities. Public Health Genomics 20
  26. , 46-57. doi:10.1159/000452093 open in new tab
  27. Hewitt, R. E. (2011). Biobanking: The foundation of personalized medicine. Curr. Opin. Oncol. 23 (1), 112-119. doi:10.1097/CCO.0b013e32834161b8 open in new tab
  28. Hoeyer, K. (2010). Donors perceptions of consent to and feedback from biobank research: Time to acknowledge diversity? Public Health Genomics 13 (6), 345-352. doi:10.1159/000262329 open in new tab
  29. Irving, M. J., Jan, S., Tong, A., Wong, G., Craig, J. C., Chadban, S., et al. (2014). open in new tab
  30. What factors influence people's decisions to register for organ donation? The results of a nominal group study. Transpl. Int. 27 (6), 617-624. doi:10.1111/tri.12307 open in new tab
  31. Irving, M. J., Tong, A., Jan, S., Cass, A., Rose, J., Chadban, S., et al. (2012). Factors that influence the decision to be an organ donor: A systematic review of the qualitative literature. Nephrol. Dial. Transpl. 27 (6), 2526-2533. doi:10.1093/ndt/ gfr683 open in new tab
  32. Jacyna, S. (2009). The most important of all the organs: Darwin on the brain. Brain 132, 3481-3487. doi:10.1093/brain/awp283 open in new tab
  33. Johnsson, L., Helgesson, G., Rafnar, T., Halldorsdottir, I., Chia, K. S., Eriksson, S., et al. (2010). Hypothetical and factual willingness to participate in biobank research. Eur. J. Hum. Genet. 18 (11), 1261-1264. doi:10.1038/ejhg.2010.106 open in new tab
  34. Kaufman, D. J., Baker, R., Milner, L. C., Devaney, S., and Hudson, K. L. (2016). A survey of U.S adults' opinions about conduct of a nationwide Precision Medicine Initiative ® cohort study of genes and environment. PLoS One 11 (8), e0160461-14. doi:10.1371/journal.pone.0160461 open in new tab
  35. Kettis-Lindblad, Å., Ring, L., Viberth, E., and Hansson, M. G. (2006). Genetic research and donation of tissue samples to biobanks. What do potential sample donors in the Swedish general public think? Eur. J. Public Health 16, 433-440. doi:10.1093/eurpub/cki198 open in new tab
  36. Khatib, F., Jibrin, D., Al-Majali, J., Elhussieni, M., Almasaid, S., and Ahram, M. (2021). Views of University students in Jordan towards biobanking. BMC Med. Ethics 22, 152. doi:10.1186/s12910-021-00719-y open in new tab
  37. Kowal, E., Greenwood, A., and McWhirter, R. E. (2015). All in the blood: A review of aboriginal Australians' cultural beliefs about blood and implications for biospecimen research. J. Empir. Res. Hum. Res. Ethics 10 (4), 347-359. doi:10. 1177/1556264615604521 open in new tab
  38. Lam, W., and McCullough, L. B. (2000). Influence of religious and spiritual values on the willingness of Chinese-Americans to donate organs for transplantation. Clin. Transpl. 14 (5), 449-456. doi:10.1034/j.1399-0012.2000.140502.x open in new tab
  39. Lewis, C., Clotworthy, M., Hilton, S., Magee, C., Robertson, M. J., Stubbins, L. J., et al. (2013). Public views on the donation and use of human biological samples in biomedical research: A mixed methods study. BMJ Open 3, e003056. doi:10.1136/ bmjopen-2013-003056 open in new tab
  40. Li, M. T., Hillyer, G. C., Husain, S. A., and Mohan, S. (2019). Cultural barriers to organ donation among Chinese and Korean individuals in the United States: A systematic review. Transpl. Int. 32, 1001-1018. doi:10.1111/tri.13439 open in new tab
  41. Li, Z., Lei, S., Li, X., Zhao, Y., Dai, Y., Jin, S., et al. (2021). Blood donation fear, perceived rewards, self-efficacy, and intention to return among whole blood donors in China: A social cognitive perspective. Front. Psychol. 12, 683709. doi:10.3389/ fpsyg.2021.683709 open in new tab
  42. Makhlouf, H., Alrabadi, N., Khabour, O. F., Alzoubi, K. H., and Al-Delaimy, W. (2019). Population's perspectives toward biobanks in scientific research: A study from Jordan. Pharmgenomics. Pers. Med. 12, 23-32. doi:10.2147/PGPM. S187657 open in new tab
  43. Malsagova, K., Kopylov, A., Stepanov, A., Butkova, T., Sinitsyna, A., Izotov, A., et al. (2020). Biobanks -a platform for scientific and biomedical research. Diagnostics 10 (7), 485. doi:10.3390/diagnostics10070485 open in new tab
  44. Merdad, L., Aldakhil, L., Gadi, R., Assidi, M., Saddick, S. Y., Abuzenadah, A., et al. (2017). Assessment of knowledge about biobanking among healthcare students and their willingness to donate biospecimens. BMC Med. Ethics 18 (1), 32. doi:10.1186/ s12910-017-0195-8 open in new tab
  45. Mezinska, S., Kaleja, J., Mileiko, I., Santare, D., Rovite, V., and Tzivian, L. (2020). open in new tab
  46. Public awareness of and attitudes towards research biobanks in Latvia. BMC Med. Ethics 21 (1), 65. doi:10.1186/s12910-020-00506-1 open in new tab
  47. Mostafazadeh-Bora, M., and Zarghami, A. (2017). The crucial role of cultural and religious beliefs on organ transplantation. Int. J. Organ Transpl. Med. 8 (1), 54. O'Neill, O. (2003). Some limits of informed consent. J. Med. Ethics 29 (1), 4-7. doi:10.1136/jme.29.1.4 open in new tab
  48. Overby, L. C., Maloney, K. A., Alestock, T. D., Chavez, J., Berman, D., Sharaf, R.
  49. M., et al. (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. J. Pers. Med. 5 (3), 264-279. doi:10.3390/ jpm5030264 open in new tab
  50. Paskal, W., Paskal, A. M., Dębski, T., Gryziak, M., and Jaworowski, J. (2018). open in new tab
  51. Aspects of modern biobank activity -comprehensive review. Pathol. Oncol. Res. 24 (4), 771-785. doi:10.1007/s12253-018-0418-4 open in new tab
  52. Pawlikowski, J. (2013). Biobankowanie ludzkiego materiału biologicznego dla celów badań naukowych-aspekty organizacyjne, etyczne, prawne i społeczne [Biobanking of human biological material for research purposes -organizational, ethical legal and social issues]. Lublin: Wydawnictwo Uniwersytetu Medycznego w Lublinie. (in Polish).
  53. Prictor, M., Lewis, M. A., Newson, A. J., Haas, M., Baba, S., Kim, H., et al. (2020). Dynamic consent: An evaluation and reporting framework. J. Empir. Res. Hum. Res. Ethics 15 (3), 175-186. doi:10.1177/1556264619887073 open in new tab
  54. Rahm, A. K., Wrenn, M., Carroll, N. M., and Fiegelson, H. S. (2013). Biobanking for research: A survey of patient population attitudes and understanding. open in new tab
  55. J. Community Genet. 4 (4), 445-450. doi:10.1007/s12687-013-0146-0 open in new tab
  56. Raivola, V., Snell, K., Helén, I., and Partanen, J. (2019). Attitudes of blood donors to their sample and data donation for biobanking. Eur. J. Hum. Genet. 27, 1659-1667. doi:10.1038/s41431-019-0434-1 open in new tab
  57. Riva, M. A., Riva, E., Spicci, M., Strazzabosco, M., Giovannini, M., and Cesana, G. (2011). The city of hepar": Rituals, gastronomy, and politics at the origins of the modern names for the liver. J. Hepatol. 55 (5), 1132-1136. doi:10.1016/j.jhep.2011. 05.011 open in new tab
  58. Simon, M. A., Tom, L. S., and Dong, X. (2017). Knowledge and beliefs about biospecimen research among Chinese older women in Chicago's Chinatown. open in new tab
  59. J. Gerontol. A Biol. Sci. Med. Sci. 72, S41-S49. doi:10.1093/gerona/glw333 open in new tab
  60. Tomlinson, T., De Vries, R., Ryan, K., Kim, H. M., Lehpamer, N., and Kim, S. Y. (2015). Moral concerns and the willingness to donate to a research biobank. JAMA 313 (4), 417-419. doi:10.1001/jama.2014.16363 open in new tab
  61. Trein, P., and Wagner, J. (2021). Governing personalized health: A scoping review. Front. Genet. 12, 650504. doi:10.3389/fgene.2021.650504 open in new tab
  62. Tupasela, A., Sihvo, S., Snell, K., Jallinoja, P., Aro, A. R., and Hemminki, E. (2011). Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns. Scand. J. Public Health 38 (1), 46-52. doi:10.1177/ 1403494809353824 open in new tab
  63. Tutton, R., Kaye, J., and Hoeyer, K. (2004). Governing UK biobank: The importance of ensuring public trust. Trends Biotechnol. 22 (6), 284-285. doi:10. 1016/j.tibtech.2004.04.007 open in new tab
  64. Vaz, M., Vaz, M., and Srinivasan, K. (2015). Listening to the voices of the general public in India on biomedical research -an exploratory study. Indian J. Med. Ethics 12, 68-77. doi:10.20529/IJME.2015.024 open in new tab
  65. Wagner, T. R., and Manolis, C. (2012). The fear associated with blood and organ donation: An explication of fright and anxiety. Prog. Transpl. 22 (2), 200-206. doi:10.7182/pit2012467 open in new tab
  66. Witoń, M., Strapagiel, D., Gleńska-Olender, J., Chróścicka, A., Ferdyn, K., Skokowski, J., et al. (2017). Organization of BBMRI.pl: The polish biobanking Network. Biopreserv. Biobank. 15 (3), 264-269. doi:10.1089/bio.2016.0091 open in new tab
  67. Frontiers in Genetics frontiersin.org open in new tab
Verified by:
No verification

seen 50 times

Recommended for you

Meta Tags