Attitudes regarding privacy of genomic information in personalized cancer therapy

Rogith, Deevakar; Yusuf, Rafeek A.; Hovick, Shelley R; Peterson, Susan K.; Burton-Chase, Allison M.; Li, Yisheng; Meric‐Bernstam, Funda; Bernstam, Elmer V.

doi:10.1136/amiajnl-2013-002579

Cited by 28 publications

(33 citation statements)

References 20 publications

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“…This was a cross-sectional survey with conventional sampling. These questions were part of a larger questionnaire and focused on demographics, definitions, expectations and knowledge about research [24, 25]. The knowledge questionnaire included 16 questions each of which could be answered “True”, “False” or “Do not know” (Supplementary Document 1).…”

Section: Methodsmentioning

confidence: 99%

“…The information-seeking questionnaire contained multiple-choice questions that assessed where participants looked for information and how they used the information that they found. Additional questions assessed attitudes regarding privacy of genomic information and research participation [24, 25]. We recorded participants’ age, insurance, and clinical variables such as duration of illness, cancer stage, history of cancer therapy, history of genetic testing, and consent for tissue banking from the participants’ medical records.…”

Section: Methodsmentioning

confidence: 99%

“…Questions covering key concepts in PCT were developed by the study team based on literature review and expert knowledge [24, 25]. Prior to administration, the questionnaires were reviewed for content validity and underwent pilot testing.…”

Section: Methodsmentioning

confidence: 99%

“…Research staff were available to address any issues regarding completing the questionnaire. Additional data were obtained from patients’ medical records [24, 25]. …”

Section: Methodsmentioning

confidence: 99%

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Patient knowledge and information-seeking about personalized cancer therapy

Rogith¹,

Yusuf²,

Hovick

et al. 2016

International Journal of Medical Informatics

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Background Understanding patients’ knowledge and prior information-seeking regarding personalized cancer therapy (PCT) may inform future patient information systems, consent for molecular testing and PCT protocols. We evaluated breast cancer patients’ knowledge and information-seeking behaviors regarding PCT. Methods Newly registered female breast cancer patients (n=100) at a comprehensive cancer center completed a self-administered questionnaire prior to their first clinic visit. Results Knowledge regarding cancer genetics and PCT was moderate (mean 8.7 +/− 3.8 questions correct out of 16). A minority of patients (27%) indicated that they had sought information regarding PCT. Higher education (p=0.009) and income levels (p=0.04) were associated with higher knowledge scores and with seeking PCT information (p=0.04). Knowledge was not associated with willingness to participate in PCT research. Conclusion Educational background and financial status impact patient knowledge as well as information-seeking behavior. For most patients, clinicians are likely to be patients’ initial source of information about PCT. Understanding patients’ knowledge deficits at presentation may help inform patient education efforts.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

“…Research staff were available to address any issues regarding completing the questionnaire. Additional data were obtained from patients’ medical records [24, 25]. …”

Section: Methodsmentioning

confidence: 99%

See 2 more Smart Citations

Patient knowledge and information-seeking about personalized cancer therapy

Rogith¹,

Yusuf²,

Hovick

et al. 2016

International Journal of Medical Informatics

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“…Evidence regarding public awareness of confidentiality risks is conflicting (Kaufman et al, 2009;Brothers et al, 2011;Oliver et al, 2011;Trinidad et al, 2012;Rogith et al, 2014). A survey study (N = 1041) about consent to a hypothetical biobank found that 75% of participants disapproved of using their genetic material because of security concerns (Kerath et al, 2013).…”

mentioning

confidence: 99%

Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks

Siminoff

Wilson‐Genderson

Mosavel

et al. 2017

Genetic Testing and Molecular Biomarkers

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Aims: Confidentiality of personal identifiers potentially linking the genetic results from biobanking participants back to the donor and donor relatives is a concern. The risks associated with a breach of confidentiality should be ascertained when biobanks collect samples requiring the consent of a family decision maker (FDM) from deceased organ and tissue donors. This article explores FDM knowledge and opinions regarding risks associated with participation in biobanking research in the context of the Genotype-Tissue Expression (GTEx) Project. Methods: Data collection included a survey completed by organ procurement organization requesters (n = 37) and semistructured telephone interviews with the FDMs (n = 85). Results: Donor families were more likely to know that there was a risk that a patient's identity could be revealed through a breach of confidentiality ( p < 0.05). They also were more likely to understand that researchers using biobanked tissue would not have access to the patient's exact identity ( p < 0.05). FDMs who refused donation were more concerned about risks than donors and reported lower levels of support for medical research in general. Finally, families were frequently interested in the return of results and willing to trade absolute confidentiality for participation. Conclusions: Clear discussion of the risk of breach of confidentiality is needed during the consent process. The risk and benefit equation could be equalized if studies such as GTEx offered genomic results to interested participants.

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Patients’ and Oncologists’ Knowledge and Expectations Regarding Tumor Multigene Next-Generation Sequencing: A Narrative Review

et al. 2021

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Background. Tumor multigene next-generation sequencing (NGS) is increasingly being offered to cancer patients to guide clinical management and determine eligibility for clinical trials. We undertook a review of studies examining the knowledge and attitudes of patients and oncologists regarding the primary results and potential secondary findings of such testing. Materials and Methods. A search was conducted through the MEDLINE database using the following keywords: "neoplasms" and "molecular sequencing / genome sequencing / tumor profiling / NGS / whole exome sequencing" and "patient / oncologist" and "knowledge / attitudes / satisfaction / experience / evaluation / perspective / practice / preference." Articles meeting the inclusion criteria and additional relevant articles from their references were selected. Results. From 1,142 publications identified by the search and 9 from references, 21 publications were included in the final review. Patients generally had positive attitudes

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Attitudes regarding privacy of genomic information in personalized cancer therapy

Abstract: 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.

Cited by 28 publications

References 20 publications

Patient knowledge and information-seeking about personalized cancer therapy

Patient knowledge and information-seeking about personalized cancer therapy

Confidentiality in Biobanking Research: A Comparison of Donor and Nondonor Families' Understanding of Risks

Patients’ and Oncologists’ Knowledge and Expectations Regarding Tumor Multigene Next-Generation Sequencing: A Narrative Review

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