Cancer patient perceptions about biobanking and preferred timing of consent

Biopreservation and Biobanking

Volumn 12, Issue 2, 2014, Pages 106-112

  Braun, Kathryn L ^a,b   Tsark, Joann U ^b   Powers, Amy ^c   Croom, Kristen ^c   Kim, Robert ^c   Gachupin, Francine C ^d   Morris, Paul ^c  

^a UNIVERSITY OF HAWAII   (United States)

^b Papa Ola Lokahi   (United States)

^c QUEEN S MEDICAL CENTER   (United States)

^d UNIVERSITY OF ARIZONA COLLEGE OF MEDICINE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; BIOBANK; BREAST CANCER; CANCER PATIENT; CANCER SURVIVOR; CANCER TISSUE; CLINICAL ARTICLE; CONFIDENTIALITY; FEMALE; FOLLOW UP; GYNECOLOGIC CANCER; HEALTH CARE FACILITY; HUMAN; HUMAN TISSUE; INFORMED CONSENT; INTERPERSONAL COMMUNICATION; LUNG CANCER; MALE; MEDICAID; MEDICARE; PATIENT ATTITUDE; PATIENT EDUCATION; PRIORITY JOURNAL; PROSTATE CANCER; SCIENTIST; STRUCTURED INTERVIEW; THYROID CANCER; TISSUE PRESERVATION; TUMOR BIOPSY; DONOR; ETHNOLOGY; INTERVIEW; MIDDLE AGED; NEOPLASMS; PSYCHOLOGY; QUESTIONNAIRE; TIME; VERY ELDERLY;

ADULT; AGED; AGED, 80 AND OVER; FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; NEOPLASMS; QUESTIONNAIRES; TIME FACTORS; TISSUE BANKS; TISSUE DONORS;

EID: 84899066854     PISSN: 19475535     EISSN: 19475543     Source Type: Journal    
DOI: 10.1089/bio.2013.0083     Document Type: Article

References (25)

1. De Souza YG, Greenspan JS. Biobanking past, present and future: Responsibilities and benefits. AIDS 2013;27:303-312.
2. Beskow LM, Friedman JY, Hardy NC et al. Developing a simplified consent form for biobanking. PLoS ONE 2010; 5:e13302.
3. College of American Pathologists. Retention of laboratory records and materials, 2010. Retrieved Sept 6, 2013 from http://www.cap.org/apps/cap.portal? -nfpb=true&cntvwrPtlt- actionOverride = %2Fportlets%2FcontentViewer%2Fshow& cntvwrPtlt%7BactionForm. contentReference%7D= policies% 2Fpolicy-appPP.html&-pageLabel=cntvwr.
4. Mancini J, Pellegrini I, Viret F, et al. Consent for biobanking: Assessing the understanding and views of cancer patients JNCI 2011;103:154-156.
5. Hewitt R, Watson PH, Dhir R, et al. Timing of consent for the research use of surgically removed tissue: Is postoperative consenting acceptable? Cancer 2009;115:4-9.
6. U.S. Department of Health and Human Services. 2011 NCI Best Practices for Biospecimen Resources. Washington DC: Office of Biorepositories and Biospecimen Research National Cancer Institute National Institutes of Health. Retrieved Sept 6, 2013 from http://biospecimens.cancer .gov/practices/2011bp.asp.
7. Gerber DE, Rasco DW, Skinner CS, et al. Consent timing and experience: Modifiable factors that may influence interest in clinical research. J Oncol Pract 2012;8:91-96.
8. Helft PR, Champion VL, Eckles R, et al. Cancer patients' attitudes toward future research uses of stored human biologicalmaterials. J Empir Res HumRes Ethics 2007;2:15-22.
9. Hoeyer K, Olofsson B-O, Mjörndal T, et al. The ethics of research using biobanks: Reason to question the importance attributed to informed consent. Arch Intern Med 2005; 165:97-100. (Pubitemid 40096089)
10. Luque JS, Quinn GP, Montel-Ishino FA, et al. Formative research on perceptions of biobanking: What community members think. J Canc Educ 2012;27:91-99.
11. Master Z, Claudio JO, Rachul C, et al. Cancer patient perceptions on the ethical and legal issues related to biobanking. BMC Med Genomics 2013;8:6:8.
12. Murphy J, Scott J, Kaufman D, et al. Public perspectives on informed consent for biobanking. Am J Public Health 2009;99:2128-2134.
13. Pulley JM, Brace MM, Bernard GR, et al. Attitudes and perceptions of patients towards methods of establishing a DNA biobank. Cell Tissue Bank 2008;9:55-65. (Pubitemid 351279801)
14. Rachul C, McGuire A, Caufield T. Public perceptions and biobanking: What does the research really say? Studies in Ethics, Law, and Technology: 2012;6:3.
15. van Schalkwyk G, de Vries J, Moddley K. aIt's for a good cause, isn't it?'' exploring views of South African TB research participants on sample storage and re-use. BMC Med Ethics 2012;13:19.
16. Fong M, Braun KL, Chang M. Native Hawaiian preferences for informed consent and disclosure of results from genetic research. J Cancer Educ 2006;21:S47-S52.
17. Taualii M, Davis EL, Braun KL, et al. Guidelines for successful engagement to discuss biobanking among Native Hawaiians. Unpublished manuscript. 2013.
18. Pope C, Ziebland S, Mays N. Analysing qualitative data. BMJ 2000;320:114-116. PMCID: PMC1117368. (Pubitemid 30173056)
19. Crabtree BF, Miller WL. Doing Qualitative Research, 2nd ed. Thousand Oaks, CA: Sage Publications; 1999.
20. Pukui MK, Haertig EW, Lee CA, et al. Nana I ke kumu (Look to the Source). Honolulu: Hui Hanai, 1972.
21. Albrecht TL, Eggly SS, Gleason ME, et al. Influence of clinical communication on patients' decision making on participation in clinical trials. J Clin Oncol 2008;2666-2673.
22. Rasco DW, Xie Y, Yan J, et al. The impact of consenter characteristics and experience on patient interest in clinical research. Oncologist 2009;14:468-475.
23. Portnoy DB. Waiting is the hardest part: Anticipating medical test results affects processing and recall of important information. Soc Sci Med 2010;71:421-428.
24. Chen DT, Rosenstein DL, Muthappan P, et al. Research with stored biological samples: What do research participants want? Arch Intern Med 2005;165:652-655. (Pubitemid 40393147)
25. Hansson MG. Ethics and biobanks. Br J Cancer 2009; 100:8-12.