Literature DB >> 24749877

Cancer patient perceptions about biobanking and preferred timing of consent.

Kathryn L Braun1, Joann U Tsark, Amy Powers, Kristen Croom, Robert Kim, Francine C Gachupin, Paul Morris.   

Abstract

Little is known about how cancer patients feel about donating their tissue, especially in a multiethnic population. Structured interviews were conducted with 30 patients recently diagnosed with cancer, referred to the study by six cancer surgeons and oncologists and by other patients in the study. The participants reported a variety of cancers, and the sample reflected the racial distribution of Hawai`i, including Caucasians (23%), Native Hawaiians and Pacific Islanders (27%), Asians (37%), Hispanics (7%), Native Americans (3%), and African Americans (3%). The interview questions and analysis were guided by the Framework Approach, with interview questions based on pre-set aims. Findings suggest that most cancer patients would donate cancer tissue to science, especially if informed that doing so could help researchers find causes of and cures for cancer. Patients varied on when in their cancer journey they would be most receptive to being asked for a donation, however two-thirds thought they would be more receptive if approached after surgery. Only three of the 30 patients said they would want to be re-consented each time their tissue is requested for research. They identified their physician as the preferred messenger regarding tissue donation. No obvious differences were seen by race. Findings confirm those of other researchers who have reported broad support for biobank participation if informed consent and confidentiality could be assured. Given that the physician was seen as the key messenger about biobanking, more education is needed around cancer tissue collection for physicians, as well as for cancer patients.

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Year:  2014        PMID: 24749877      PMCID: PMC3995435          DOI: 10.1089/bio.2013.0083

Source DB:  PubMed          Journal:  Biopreserv Biobank        ISSN: 1947-5543            Impact factor:   2.300


  19 in total

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3.  The ethics of research using biobanks: reason to question the importance attributed to informed consent.

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4.  Native Hawaiian preferences for informed consent and disclosure of results from genetic research.

Authors:  Megan Fong; Kathryn L Braun; R Mei-Ling Chang
Journal:  J Cancer Educ       Date:  2006       Impact factor: 2.037

5.  Formative research on perceptions of biobanking: what community members think.

Authors:  John S Luque; Gwendolyn P Quinn; Francisco A Montel-Ishino; Mariana Arevalo; Shalanda A Bynum; Shalewa Noel-Thomas; Kristen J Wells; Clement K Gwede; Cathy D Meade
Journal:  J Cancer Educ       Date:  2012-03       Impact factor: 2.037

6.  Waiting is the hardest part: anticipating medical test results affects processing and recall of important information.

Authors:  David B Portnoy
Journal:  Soc Sci Med       Date:  2010-07       Impact factor: 4.634

7.  Consent timing and experience: modifiable factors that may influence interest in clinical research.

Authors:  David E Gerber; Drew W Rasco; Celette Sugg Skinner; Jonathan E Dowell; Jingsheng Yan; Jennifer R Sayne; Yang Xie
Journal:  J Oncol Pract       Date:  2011-12-06       Impact factor: 3.840

8.  Attitudes and perceptions of patients towards methods of establishing a DNA biobank.

Authors:  Jill M Pulley; Margaret M Brace; Gordon R Bernard; Dan R Masys
Journal:  Cell Tissue Bank       Date:  2007-10-25       Impact factor: 1.522

Review 9.  Biobanking past, present and future: responsibilities and benefits.

Authors:  Yvonne G De Souza; John S Greenspan
Journal:  AIDS       Date:  2013-01-28       Impact factor: 4.177

10.  Cancer patient perceptions on the ethical and legal issues related to biobanking.

Authors:  Zubin Master; Jaime O Claudio; Christen Rachul; Jean C Y Wang; Mark D Minden; Timothy Caulfield
Journal:  BMC Med Genomics       Date:  2013-03-08       Impact factor: 3.063

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  22 in total

Review 1.  An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.

Authors:  Jaclyn Aramoana; Jonathan Koea
Journal:  J Glob Oncol       Date:  2019-03

2.  Factors associated with willingness to provide biospecimens for genetics research among African American cancer survivors.

Authors:  Altovise T Ewing; Nnenna Kalu; Gloria Cain; Lori H Erby; Luisel J Ricks-Santi; Eva Tetteyfio-Kidd Telemaque; Denise M Scott
Journal:  J Community Genet       Date:  2019-03-14

3.  Biospecimen donation among black and white breast cancer survivors: opportunities to promote precision medicine.

Authors:  Vanessa B Sheppard; Alejandra Hurtado-de-Mendoza; Yun-Ling Zheng; Ying Wang; Kristi D Graves; Tania Lobo; Hanfei Xu; Yvonne Jennings; Dennis Tolsma; Martha Trout; Brandi E Robinson; Brittany McKinnon; Mahlet Tadesse
Journal:  J Cancer Surviv       Date:  2017-11-16       Impact factor: 4.442

4.  Development and validation of the biobanking attitudes and knowledge survey-Spanish (BANKS-SP).

Authors:  Mariana Arevalo; Paul B Jacobsen; Clement K Gwede; Cathy D Meade; Gwendolyn P Quinn; John S Luque; Gloria San Miguel; Dale Watson; Kristen J Wells
Journal:  J Community Genet       Date:  2016-09-15

Review 5.  An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.

Authors:  Jaclyn Aramoana; Jonathan Koea
Journal:  JCO Glob Oncol       Date:  2019-03-07

6.  Secondary Use of Patient Tissue in Cancer Biobanks.

Authors:  Debra J H Mathews; Julia T Rabin; Katharine Quain; Eric Campbell; Deborah Collyar; Fay J Hlubocky; Steven Isakoff; Jeffrey Peppercorn
Journal:  Oncologist       Date:  2019-06-10

7.  "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.

Authors:  Sonia Yip; Jennifer Fleming; Heather L Shepherd; Adam Walczak; Jonathan Clark; Phyllis Butow
Journal:  Oncologist       Date:  2018-11-09

Review 8.  An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.

Authors:  Jaclyn Aramoana; Jonathan Koea
Journal:  J Glob Oncol       Date:  2019-03-07

9.  Perceptions of patients with inflammatory bowel diseases on biobanking.

Authors:  Millie D Long; R Jean Cadigan; Suzanne F Cook; Kaaren Haldeman; Kriste Kuczynski; Robert S Sandler; Christopher F Martin; Wenli Chen; Michael D Kappelman
Journal:  Inflamm Bowel Dis       Date:  2015-01       Impact factor: 5.325

10.  Patient Preferences for Use of Archived Biospecimens from Oncology Trials When Adequacy of Informed Consent Is Unclear.

Authors:  Jeffrey Peppercorn; Eric Campbell; Steve Isakoff; Nora K Horick; Julia Rabin; Katharine Quain; Lecia V Sequist; Aditya Bardia; Deborah Collyar; Fay Hlubocky; Debra Mathews
Journal:  Oncologist       Date:  2019-09-06
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