title: Attitudes regarding privacy of genomic information in personalized cancer therapy.
abstract: OBJECTIVE
  To evaluate attitudes regarding privacy of genomic data in a sample of patients with breast cancer.
  
  
  METHODS
  Female patients with breast cancer (n=100) completed a questionnaire assessing attitudes regarding concerns about privacy of genomic data.
  
  
  RESULTS
  Most patients (83%) indicated that genomic data should be protected. However, only 13% had significant concerns regarding privacy of such data. Patients expressed more concern about insurance discrimination than employment discrimination (43% vs 28%, p<0.001). They expressed less concern about research institutions protecting the security of their molecular data than government agencies or drug companies (20% vs 38% vs 44%; p<0.001). Most did not express concern regarding the association of their genomic data with their name and personal identity (49% concerned), billing and insurance information (44% concerned), or clinical data (27% concerned). Significantly fewer patients were concerned about the association with clinical data than other data types (p<0.001). In the absence of direct benefit, patients were more willing to consent to sharing of deidentified than identified data with researchers not involved in their care (76% vs 60%; p<0.001). Most (85%) patients were willing to consent to DNA banking.
  
  
  CONCLUSIONS
  While patients are opposed to indiscriminate release of genomic data, privacy does not appear to be their primary concern. Furthermore, we did not find any specific predictors of privacy concerns.
  
  
  CONCLUSIONS
  Patients generally expressed low levels of concern regarding privacy of genomic data, and many expressed willingness to consent to sharing their genomic data with researchers.
authors.affiliation: The University of Texas School of Biomedical Informatics, Houston, Texas, USA.
authors.forename: Deevakar
authors.initials: D
authors.lastname: Rogith
authors.affiliation: The University of Texas School of Biomedical Informatics, Houston, Texas, USA.
authors.forename: Rafeek A
authors.initials: RA
authors.lastname: Yusuf
authors.affiliation: The University of Texas MD Anderson Cancer Center, Houston, Texas, USA The Ohio State University, Columbus, Ohio, USA.
authors.forename: Shelley R
authors.initials: SR
authors.lastname: Hovick
authors.affiliation: The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
authors.forename: Susan K
authors.initials: SK
authors.lastname: Peterson
authors.affiliation: The University of Texas MD Anderson Cancer Center, Houston, Texas, USA Albany College of Pharmacy and Health Sciences, Albany, New York, USA.
authors.forename: Allison M
authors.initials: AM
authors.lastname: Burton-Chase
authors.affiliation: The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
authors.forename: Yisheng
authors.initials: Y
authors.lastname: Li
authors.affiliation: The University of Texas MD Anderson Cancer Center, Houston, Texas, USA.
authors.forename: Funda
authors.initials: F
authors.lastname: Meric-Bernstam
authors.affiliation: The University of Texas School of Biomedical Informatics, Houston, Texas, USA Division of General Internal Medicine, Department of Internal Medicine, The University of Texas Health Science Center at Houston, Houston, Texas, USA.
authors.forename: Elmer V
authors.initials: EV
authors.lastname: Bernstam
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000235:genetics* / Q000628:therapy; D016009:Chi-Square Distribution; D003219:Confidentiality; D005260:Female; D052138:Genes, Neoplasm; D006801:Humans; D008875:Middle Aged; D057285:Precision Medicine / Q000941:ethics*; D011795:Surveys and Questionnaires
references.citation: Nat Rev Clin Oncol. 2012 Sep;9(9):542-8
references.pmid: 22850751
references.citation: Genet Med. 2010 Aug;12(8):486-95
references.pmid: 20535021
references.citation: Science. 2006 Apr 21;312(5772):370-1
references.pmid: 16627725
references.citation: J Am Med Inform Assoc. 2013 Jan 1;20(1):152-6
references.pmid: 22847306
references.citation: J Oncol Pract. 2012 Nov;8(6):329-35, 2 p following 335
references.pmid: 23598841
references.citation: N Engl J Med. 2008 Jun 19;358(25):2661-3
references.pmid: 18565857
references.citation: Eur J Hum Genet. 2003 Dec;11 Suppl 2:S88-122
references.pmid: 14718939
references.citation: N Engl J Med. 2006 Aug 10;355(6):545-6
references.pmid: 16899773
references.citation: Eur J Hum Genet. 2010 Nov;18(11):1261-4
references.pmid: 20648060
references.citation: Genet Med. 2008 Jul;10(7):495-9
references.pmid: 18580687
references.citation: Nat Rev Cancer. 2004 Mar;4(3):235-41
references.pmid: 14993905
references.citation: J Genet Couns. 2012 Apr;21(2):345-52
references.pmid: 21927977
references.citation: Science. 2004 Jul 9;305(5681):183
references.pmid: 15247459
references.citation: Value Health. 2007 Nov-Dec;10(6):478-88
references.pmid: 17970930
references.citation: Genet Med. 2003 Jul-Aug;5(4):261-8
references.pmid: 12865755
references.citation: Nat Rev Drug Discov. 2010 May;9(5):363-6
references.pmid: 20431568
references.citation: Science. 2013 Jan 18;339(6117):321-4
references.pmid: 23329047
references.citation: Clin Genet. 2006 May;69(5):393-8
references.pmid: 16650074
references.citation: Am J Hum Genet. 2009 Nov;85(5):643-54
references.pmid: 19878915
references.citation: Nat Rev Genet. 2008 May;9(5):356-69
references.pmid: 18398418