Privacy Concerns About Personal Health Information and Fear of Unintended Use of Biospecimens Impact Donations by Africa
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Privacy Concerns About Personal Health Information and Fear of Unintended Use of Biospecimens Impact Donations by African American Patients Arthi Reddy 1 & Abhimanyu Amarnani 2 & Michael Chen 1 & Sophia Dynes 1 & Bryan Flores 1 & Ariella Moshchinsky 1 & Yeon Joo Lee 1 & Vadim Kurbatov 1,3 & Iuliana Shapira 4 & Shivakumar Vignesh 1 & Laura Martello 1,2
# American Association for Cancer Education 2019
Abstract Biospecimen donation is essential for studies of cancer prevention, early detection, and treatment. Donations from minority groups, for whom the cancer burden is high, are infrequent and inadequate for research purposes. The obstacles to donation of biospecimens by African Americans and other minority groups must be identified. Patients aged 18–85 years were surveyed based on the clinic visited (group A: GI/primary care and group B: oncology with confirmed cancer diagnosis) and analyzed as separate groups. The validated biobanking attitudes and knowledge survey (BANKS) as well as pancreatic cancer questions were used. In group A, 278/292 surveys were completed (5/6 patients participated). In group B, 54/59 surveys were completed (4/5 patients participated). There were low mean scores on the BANKS knowledge sections, specifically in regard to specimen ownership and the separation of research and medical records. Also, two major concerns limited donation: (1) fear that personal, medical, and family medical information may be stolen from the biobank; and (2) mistrust that biospecimens could be used for unintended purposes. Low knowledge about biospecimen acquisition, added to mistrust, warrant community-based, and patient education in an effort to improve attitudes, increase participation, and regain healthy therapeutic alliances. Keywords Biospecimen . Biobanking . Healthcare disparity
Introduction African Americans face not only high cancer incidence and mortality rates, but also the shortest survival times postdiagnosis for prostate, colon, and pancreatic cancers [1]. The ability for research to inform and guide care of these patients depends on access to biospecimens from this population. Despite efforts by government agencies including the
* Laura Martello [email protected] 1
Department of Medicine and Division of Gastroenterology & Hepatology, State University of New York (SUNY), Downstate Medical Center, MSC 1196, Brooklyn, NY 11203, USA
2
Department of Cell Biology, State University of New York (SUNY), Downstate Medical Center, MSC 1196, Brooklyn, NY 11203, USA
3
Present address: Department of General Surgery, Yale School of Medicine, New Haven, CT 06510, USA
4
Department of Medicine and Division of Hematology & Oncology, State University of New York (SUNY), Downstate Medical Center, MSC 1196, Brooklyn, NY 11203, USA
National Institutes of Health and the Centers for Disease Control and Prevention, the rate of minority participation in tissue donation and clinical research is low (approximately 5%) relative to their true representation within the population [2, 3]. Although bio
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