Attitudes regarding privacy of genomic information in personalized cancer therapy.
J Am Med Inform Assoc
; 21(e2): e320-5, 2014 Oct.
Article
em En
| MEDLINE
| ID: mdl-24737606
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.DISCUSSION:
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.
Texto completo:
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Base de dados:
MEDLINE
Assunto principal:
Neoplasias da Mama
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Atitude Frente a Saúde
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Confidencialidade
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Medicina de Precisão
Limite:
Adult
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Aged
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Aged80
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Female
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Humans
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Middle aged
Idioma:
En
Ano de publicação:
2014
Tipo de documento:
Article