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Published in: Breast Cancer Research and Treatment 3/2012

01-12-2012 | Epidemiology

Patients’ willingness to participate in a breast cancer biobank at screening mammogram

Authors: Christoph I. Lee, Lawrence W. Bassett, Mei Leng, Sally L. Maliski, Bryan B. Pezeshki, Colin J. Wells, Carol M. Mangione, Arash Naeim

Published in: Breast Cancer Research and Treatment | Issue 3/2012

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Abstract

To characterize patients’ willingness to donate a biospecimen for future research as part of a breast cancer-related biobank involving a general screening population. We performed a prospective cross-sectional study of 4,217 women aged 21–89 years presenting to our facilities for screening mammogram between December 2010 and October 2011. This HIPAA-compliant study was approved by our institutional review board. We collected data on patients’ interest in and actual donation of a biospecimen, motivators and barriers to donating, demographic information, and personal breast cancer risk factors. A multivariate logistic regression analysis was performed to identify patient-level characteristics associated with an increased likelihood to donate. Mean patient age was 57.8 years (SD 11.1 years). While 66.0 % (2,785/4,217) of patients were willing to donate blood or saliva during their visit, only 56.4 % (2,378/4,217) actually donated. Women with a college education (OR = 1.27, p = 0.003), older age (OR = 1.02, p < 0.001), previous breast biopsy (OR = 1.23, p = 0.012), family history of breast cancer (OR = 1.23, p = 0.004), or a comorbidity (OR = 1.22, p = 0.014) were more likely to donate. Asian-American women were significantly less likely to donate (OR = 0.74, p = 0.005). The major reason for donating was to help all future patients (42.3 %) and the major reason for declining donation was privacy concerns (22.3 %). A large proportion of women participating in a breast cancer screening registry are willing to donate blood or saliva to a biobank. Among minority participants, Asian-American women are less likely to donate and further qualitative research is required to identify novel active recruitment strategies to insure their involvement.
Literature
1.
go back to reference Collins FS, Green ED, Guttmacher AE, Guyer MS (2003) A vision for the future of genomics research. Nature 422(6934):835–847PubMedCrossRef Collins FS, Green ED, Guttmacher AE, Guyer MS (2003) A vision for the future of genomics research. Nature 422(6934):835–847PubMedCrossRef
2.
go back to reference Khoury MJ, Gwinn M, Yoon PW, Dowling N, Moore CA, Bradley L (2007) The continuum of translation research in genomic medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genet Med 9(10):665–674PubMedCrossRef Khoury MJ, Gwinn M, Yoon PW, Dowling N, Moore CA, Bradley L (2007) The continuum of translation research in genomic medicine: how can we accelerate the appropriate integration of human genome discoveries into health care and disease prevention? Genet Med 9(10):665–674PubMedCrossRef
3.
go back to reference Ozdemir V, Williams-Jones B, Cooper DM, Someya T, Godard B (2007) Mapping translational research in personalized therapeutics: from molecular markers to health policy. Pharmacogenomics 8(2):177–185PubMedCrossRef Ozdemir V, Williams-Jones B, Cooper DM, Someya T, Godard B (2007) Mapping translational research in personalized therapeutics: from molecular markers to health policy. Pharmacogenomics 8(2):177–185PubMedCrossRef
4.
go back to reference Hewitt RE (2011) Biobanking: the foundation of personalized medicine. Curr Opin Oncol 23(1):112–119PubMedCrossRef Hewitt RE (2011) Biobanking: the foundation of personalized medicine. Curr Opin Oncol 23(1):112–119PubMedCrossRef
5.
go back to reference Nelson HD, Huffman LH, Fu R, Harris EL (2005) Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: systematic evidence review for the U.S. Preventive Services Task Force. Ann Intern Med 143(5):362–379. doi:143/5/362 PubMed Nelson HD, Huffman LH, Fu R, Harris EL (2005) Genetic risk assessment and BRCA mutation testing for breast and ovarian cancer susceptibility: systematic evidence review for the U.S. Preventive Services Task Force. Ann Intern Med 143(5):362–379. doi:143/​5/​362 PubMed
6.
7.
go back to reference Baer AR, Smith ML, Collyar D, Peppercorn J (2010) Issues surrounding biospecimen collection and use in clinical trials. J Oncol Pract 6(4):206–209PubMedCrossRef Baer AR, Smith ML, Collyar D, Peppercorn J (2010) Issues surrounding biospecimen collection and use in clinical trials. J Oncol Pract 6(4):206–209PubMedCrossRef
8.
go back to reference Khoury MJ, Millikan R, Little J, Gwinn M (2004) The emergence of epidemiology in the genomics age. Int J Epidemiol 33(5):936–944PubMedCrossRef Khoury MJ, Millikan R, Little J, Gwinn M (2004) The emergence of epidemiology in the genomics age. Int J Epidemiol 33(5):936–944PubMedCrossRef
9.
go back to reference Godard B, Marshall J, Laberge C (2007) Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project. Community Genet 10(3):147–158PubMedCrossRef Godard B, Marshall J, Laberge C (2007) Community engagement in genetic research: results of the first public consultation for the Quebec CARTaGENE project. Community Genet 10(3):147–158PubMedCrossRef
10.
go back to reference Forsti A, Hemminki K (2011) Breast cancer genomics based on biobanks. Methods Mol Biol 675:375–385PubMedCrossRef Forsti A, Hemminki K (2011) Breast cancer genomics based on biobanks. Methods Mol Biol 675:375–385PubMedCrossRef
11.
go back to reference Syrjakoski K, Vahteristo P, Eerola H, Tamminen A, Kivinummi K, Sarantaus L, Holli K, Blomqvist C, Kallioniemi OP, Kainu T, Nevanlinna H (2000) Population-based study of BRCA1 and BRCA2 mutations in 1035 unselected Finnish breast cancer patients. J Natl Cancer Inst 92(18):1529–1531PubMedCrossRef Syrjakoski K, Vahteristo P, Eerola H, Tamminen A, Kivinummi K, Sarantaus L, Holli K, Blomqvist C, Kallioniemi OP, Kainu T, Nevanlinna H (2000) Population-based study of BRCA1 and BRCA2 mutations in 1035 unselected Finnish breast cancer patients. J Natl Cancer Inst 92(18):1529–1531PubMedCrossRef
12.
go back to reference Lichtenstein P, Holm NV, Verkasalo PK, Iliadou A, Kaprio J, Koskenvuo M, Pukkala E, Skytthe A, Hemminki K (2000) Environmental and heritable factors in the causation of cancer—analyses of cohorts of twins from Sweden, Denmark, and Finland. N Engl J Med 343(2):78–85PubMedCrossRef Lichtenstein P, Holm NV, Verkasalo PK, Iliadou A, Kaprio J, Koskenvuo M, Pukkala E, Skytthe A, Hemminki K (2000) Environmental and heritable factors in the causation of cancer—analyses of cohorts of twins from Sweden, Denmark, and Finland. N Engl J Med 343(2):78–85PubMedCrossRef
13.
go back to reference Kaphingst KA, Janoff JM, Harris LN, Emmons KM (2006) Views of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic research. Clin Genet 69(5):393–398PubMedCrossRef Kaphingst KA, Janoff JM, Harris LN, Emmons KM (2006) Views of female breast cancer patients who donated biologic samples regarding storage and use of samples for genetic research. Clin Genet 69(5):393–398PubMedCrossRef
14.
go back to reference Hobbs SK, Shi G, Homer R, Harsh G, Atlas SW, Bednarski MD (2003) Magnetic resonance image-guided proteomics of human glioblastoma multiforme. J Magn Reson Imaging 18(5):530–536PubMedCrossRef Hobbs SK, Shi G, Homer R, Harsh G, Atlas SW, Bednarski MD (2003) Magnetic resonance image-guided proteomics of human glioblastoma multiforme. J Magn Reson Imaging 18(5):530–536PubMedCrossRef
15.
go back to reference Yang YS, Guccione S, Bednarski MD (2003) Comparing genomic and histologic correlations to radiographic changes in tumors: a murine SCC VII model study. Acad Radiol 10(10):1165–1175PubMedCrossRef Yang YS, Guccione S, Bednarski MD (2003) Comparing genomic and histologic correlations to radiographic changes in tumors: a murine SCC VII model study. Acad Radiol 10(10):1165–1175PubMedCrossRef
16.
go back to reference Forsti A, Jin Q, Altieri A, Johansson R, Wagner K, Enquist K, Grzybowska E, Pamula J, Pekala W, Hallmans G, Lenner P, Hemminki K (2007) Polymorphisms in the KDR and POSTN genes: association with breast cancer susceptibility and prognosis. Breast Cancer Res Treat 101(1):83–93PubMedCrossRef Forsti A, Jin Q, Altieri A, Johansson R, Wagner K, Enquist K, Grzybowska E, Pamula J, Pekala W, Hallmans G, Lenner P, Hemminki K (2007) Polymorphisms in the KDR and POSTN genes: association with breast cancer susceptibility and prognosis. Breast Cancer Res Treat 101(1):83–93PubMedCrossRef
17.
go back to reference Jin Q, Hemminki K, Enquist K, Lenner P, Grzybowska E, Klaes R, Henriksson R, Chen B, Pamula J, Pekala W, Zientek H, Rogozinska-Szczepka J, Utracka-Hutka B, Hallmans G, Forsti A (2005) Vascular endothelial growth factor polymorphisms in relation to breast cancer development and prognosis. Clin Cancer Res 11(10):3647–3653PubMedCrossRef Jin Q, Hemminki K, Enquist K, Lenner P, Grzybowska E, Klaes R, Henriksson R, Chen B, Pamula J, Pekala W, Zientek H, Rogozinska-Szczepka J, Utracka-Hutka B, Hallmans G, Forsti A (2005) Vascular endothelial growth factor polymorphisms in relation to breast cancer development and prognosis. Clin Cancer Res 11(10):3647–3653PubMedCrossRef
18.
go back to reference Lei H, Hemminki K, Altieri A, Johansson R, Enquist K, Hallmans G, Lenner P, Forsti A (2007) Promoter polymorphisms in matrix metalloproteinases and their inhibitors: few associations with breast cancer susceptibility and progression. Breast Cancer Res Treat 103(1):61–69PubMedCrossRef Lei H, Hemminki K, Altieri A, Johansson R, Enquist K, Hallmans G, Lenner P, Forsti A (2007) Promoter polymorphisms in matrix metalloproteinases and their inhibitors: few associations with breast cancer susceptibility and progression. Breast Cancer Res Treat 103(1):61–69PubMedCrossRef
19.
go back to reference Critchley CR, Nicol D, Otlowski MF, Stranger MJ (2010) Predicting intention to biobank: a national survey. Eur J Public Health 22(1):139–144PubMedCrossRef Critchley CR, Nicol D, Otlowski MF, Stranger MJ (2010) Predicting intention to biobank: a national survey. Eur J Public Health 22(1):139–144PubMedCrossRef
20.
go back to reference Lidz CW, Appelbaum PS, Grisso T, Renaud M (2004) Therapeutic misconception and the appreciation of risks in clinical trials. Soc Sci Med 58(9):1689–1697PubMedCrossRef Lidz CW, Appelbaum PS, Grisso T, Renaud M (2004) Therapeutic misconception and the appreciation of risks in clinical trials. Soc Sci Med 58(9):1689–1697PubMedCrossRef
21.
go back to reference Kaufman D, Murphy J, Scott J, Hudson K (2008) Subjects matter: a survey of public opinions about a large genetic cohort study. Genet Med 10(11):831–839PubMedCrossRef Kaufman D, Murphy J, Scott J, Hudson K (2008) Subjects matter: a survey of public opinions about a large genetic cohort study. Genet Med 10(11):831–839PubMedCrossRef
22.
go back to reference Axler RE, Irvine R, Lipworth W, Morrell B, Kerridge IH (2008) Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research. Pathobiology 75(6):323–329PubMedCrossRef Axler RE, Irvine R, Lipworth W, Morrell B, Kerridge IH (2008) Why might people donate tissue for cancer research? Insights from organ/tissue/blood donation and clinical research. Pathobiology 75(6):323–329PubMedCrossRef
23.
go back to reference Edwards SJ, Lilford RJ, Hewison J (1998) The ethics of randomised controlled trials from the perspectives of patients, the public, and healthcare professionals. BMJ 317(7167):1209–1212PubMedCrossRef Edwards SJ, Lilford RJ, Hewison J (1998) The ethics of randomised controlled trials from the perspectives of patients, the public, and healthcare professionals. BMJ 317(7167):1209–1212PubMedCrossRef
24.
go back to reference Fallowfield LJ, Jenkins V, Brennan C, Sawtell M, Moynihan C, Souhami RL (1998) Attitudes of patients to randomised clinical trials of cancer therapy. Eur J Cancer 34(10):1554–1559PubMedCrossRef Fallowfield LJ, Jenkins V, Brennan C, Sawtell M, Moynihan C, Souhami RL (1998) Attitudes of patients to randomised clinical trials of cancer therapy. Eur J Cancer 34(10):1554–1559PubMedCrossRef
25.
go back to reference Nurgat ZA, Craig W, Campbell NC, Bissett JD, Cassidy J, Nicolson MC (2005) Patient motivations surrounding participation in phase I and phase II clinical trials of cancer chemotherapy. Br J Cancer 92(6):1001–1005PubMedCrossRef Nurgat ZA, Craig W, Campbell NC, Bissett JD, Cassidy J, Nicolson MC (2005) Patient motivations surrounding participation in phase I and phase II clinical trials of cancer chemotherapy. Br J Cancer 92(6):1001–1005PubMedCrossRef
26.
go back to reference Paskett ED, DeGraffinreid C, Tatum CM, Margitic SE (1996) The recruitment of African-Americans to cancer prevention and control studies. Prev Med 25(5):547–553PubMedCrossRef Paskett ED, DeGraffinreid C, Tatum CM, Margitic SE (1996) The recruitment of African-Americans to cancer prevention and control studies. Prev Med 25(5):547–553PubMedCrossRef
27.
go back to reference Beskow LM, Burke W, Merz JF, Barr PA, Terry S, Penchaszadeh VB, Gostin LO, Gwinn M, Khoury MJ (2001) Informed consent for population-based research involving genetics. JAMA 286(18):2315–2321PubMedCrossRef Beskow LM, Burke W, Merz JF, Barr PA, Terry S, Penchaszadeh VB, Gostin LO, Gwinn M, Khoury MJ (2001) Informed consent for population-based research involving genetics. JAMA 286(18):2315–2321PubMedCrossRef
28.
go back to reference Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N (2004) Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health 32(3):224–229PubMedCrossRef Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N (2004) Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research. Scand J Public Health 32(3):224–229PubMedCrossRef
29.
go back to reference Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N (2005) The ethics of research using biobanks: reason to question the importance attributed to informed consent. Arch Intern Med 165(1):97–100PubMedCrossRef Hoeyer K, Olofsson BO, Mjorndal T, Lynoe N (2005) The ethics of research using biobanks: reason to question the importance attributed to informed consent. Arch Intern Med 165(1):97–100PubMedCrossRef
30.
go back to reference Eriksson S, Helgesson G (2005) Potential harms, anonymization, and the right to withdraw consent to biobank research. Eur J Hum Genet 13(9):1071–1076PubMedCrossRef Eriksson S, Helgesson G (2005) Potential harms, anonymization, and the right to withdraw consent to biobank research. Eur J Hum Genet 13(9):1071–1076PubMedCrossRef
31.
go back to reference Tu SP, Chen H, Chen A, Lim J, May S, Drescher C (2005) Clinical trials: understanding and perceptions of female Chinese-American cancer patients. Cancer 104(12 Suppl):2999–3005PubMedCrossRef Tu SP, Chen H, Chen A, Lim J, May S, Drescher C (2005) Clinical trials: understanding and perceptions of female Chinese-American cancer patients. Cancer 104(12 Suppl):2999–3005PubMedCrossRef
32.
go back to reference Nguyen TT, Somkin CP, Ma Y (2005) Participation of Asian-American women in cancer chemoprevention research: physician perspectives. Cancer 104(12 Suppl):3006–3014PubMedCrossRef Nguyen TT, Somkin CP, Ma Y (2005) Participation of Asian-American women in cancer chemoprevention research: physician perspectives. Cancer 104(12 Suppl):3006–3014PubMedCrossRef
33.
go back to reference Nguyen TT, Somkin CP, Ma Y, Fung LC, Nguyen T (2005) Participation of Asian-American women in cancer treatment research: a pilot study. J Natl Cancer Inst Monogr 35:102–105PubMedCrossRef Nguyen TT, Somkin CP, Ma Y, Fung LC, Nguyen T (2005) Participation of Asian-American women in cancer treatment research: a pilot study. J Natl Cancer Inst Monogr 35:102–105PubMedCrossRef
34.
go back to reference Pentz RD, Billot L, Wendler D (2006) Research on stored biological samples: views of African American and White American cancer patients. Am J Med Genet A 140(7):733–739PubMed Pentz RD, Billot L, Wendler D (2006) Research on stored biological samples: views of African American and White American cancer patients. Am J Med Genet A 140(7):733–739PubMed
35.
go back to reference Chen DT, Rosenstein DL, Muthappan P, Hilsenbeck SG, Miller FG, Emanuel EJ, Wendler D (2005) Research with stored biological samples: what do research participants want? Arch Intern Med 165(6):652–655PubMedCrossRef Chen DT, Rosenstein DL, Muthappan P, Hilsenbeck SG, Miller FG, Emanuel EJ, Wendler D (2005) Research with stored biological samples: what do research participants want? Arch Intern Med 165(6):652–655PubMedCrossRef
36.
go back to reference Wendler D, Emanuel E (2002) The debate over research on stored biological samples: what do sources think? Arch Intern Med 162(13):1457–1462PubMedCrossRef Wendler D, Emanuel E (2002) The debate over research on stored biological samples: what do sources think? Arch Intern Med 162(13):1457–1462PubMedCrossRef
37.
go back to reference Nilstun T, Hermeren G (2006) Human tissue samples and ethics–attitudes of the general public in Sweden to biobank research. Med Health Care Philos 9(1):81–86PubMedCrossRef Nilstun T, Hermeren G (2006) Human tissue samples and ethics–attitudes of the general public in Sweden to biobank research. Med Health Care Philos 9(1):81–86PubMedCrossRef
38.
go back to reference Kettis-Lindblad A, Ring L, Viberth E, Hansson MG (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(4):433–440PubMedCrossRef Kettis-Lindblad A, Ring L, Viberth E, Hansson MG (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(4):433–440PubMedCrossRef
39.
go back to reference Calderon JL, Baker RS, Fabrega H, Conde JG, Hays RD, Fleming E, Norris K (2006) An ethno-medical perspective on research participation: a qualitative pilot study. MedGenMed 8(2):23PubMed Calderon JL, Baker RS, Fabrega H, Conde JG, Hays RD, Fleming E, Norris K (2006) An ethno-medical perspective on research participation: a qualitative pilot study. MedGenMed 8(2):23PubMed
40.
go back to reference Gavaler JS, Bonham-Leyba M, Castro CA, Harman SE (1999) The Oklahoma Postmenopausal Women’s Health Study: recruitment and characteristics of American Indian, Asian, Black, Hispanic, and Caucasian women. Alcohol Clin Exp Res 23(2):220–223PubMed Gavaler JS, Bonham-Leyba M, Castro CA, Harman SE (1999) The Oklahoma Postmenopausal Women’s Health Study: recruitment and characteristics of American Indian, Asian, Black, Hispanic, and Caucasian women. Alcohol Clin Exp Res 23(2):220–223PubMed
41.
go back to reference Moorman PG, Skinner CS, Evans JP, Newman B, Sorenson JR, Calingaert B, Susswein L, Crankshaw TS, Hoyo C, Schildkraut JM (2004) Racial differences in enrolment in a cancer genetics registry. Cancer Epidemiol Biomarkers Prev 13(8):1349–1354PubMed Moorman PG, Skinner CS, Evans JP, Newman B, Sorenson JR, Calingaert B, Susswein L, Crankshaw TS, Hoyo C, Schildkraut JM (2004) Racial differences in enrolment in a cancer genetics registry. Cancer Epidemiol Biomarkers Prev 13(8):1349–1354PubMed
42.
go back to reference McQuillan GM, Porter KS, Agelli M, Kington R (2003) Consent for genetic research in a general population: the NHANES experience. Genet Med 5(1):35–42PubMedCrossRef McQuillan GM, Porter KS, Agelli M, Kington R (2003) Consent for genetic research in a general population: the NHANES experience. Genet Med 5(1):35–42PubMedCrossRef
43.
go back to reference Mandelblatt J, Kaufman E, Sheppard VB, Pomeroy J, Kavanaugh J, Canar J, Pallandre L, Cullen J, Huerta E (2005) Breast cancer prevention in community clinics: will low-income Latina patients participate in clinical trials? Prev Med 40(6):611–618PubMedCrossRef Mandelblatt J, Kaufman E, Sheppard VB, Pomeroy J, Kavanaugh J, Canar J, Pallandre L, Cullen J, Huerta E (2005) Breast cancer prevention in community clinics: will low-income Latina patients participate in clinical trials? Prev Med 40(6):611–618PubMedCrossRef
Metadata
Title
Patients’ willingness to participate in a breast cancer biobank at screening mammogram
Authors
Christoph I. Lee
Lawrence W. Bassett
Mei Leng
Sally L. Maliski
Bryan B. Pezeshki
Colin J. Wells
Carol M. Mangione
Arash Naeim
Publication date
01-12-2012
Publisher
Springer US
Published in
Breast Cancer Research and Treatment / Issue 3/2012
Print ISSN: 0167-6806
Electronic ISSN: 1573-7217
DOI
https://doi.org/10.1007/s10549-012-2324-x

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