DNA databanks and consent: A suggested policy option involving an authorization model
<p>Abstract</p> <p>Background</p> <p>Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing th...
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| Format: | Article |
| Language: | English |
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BMC
2003-01-01
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| Series: | BMC Medical Ethics |
| Online Access: | http://www.biomedcentral.com/1472-6939/4/1 |
| _version_ | 1818416719084912640 |
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| author | Daar Abdallah Upshur Ross EG Caulfield Timothy |
| author_facet | Daar Abdallah Upshur Ross EG Caulfield Timothy |
| author_sort | Daar Abdallah |
| collection | DOAJ |
| description | <p>Abstract</p> <p>Background</p> <p>Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material.</p> <p>Discussion</p> <p>In this paper, we discuss the difficulties of an informed consent model for future ineffable uses of genetic data. We argue that variations on consent, such as presumed consent, blanket consent or constructed consent fail to meet the standards required by current informed consent doctrine and are distortions of the original concept. In this paper, we propose the concept of an authorization model whereby participants in genetic data banks are able to exercise a certain amount of control over future uses of genetic data. We argue this preserves the autonomy of individuals at the same time as allowing them to give permission and discretion to researchers for certain types of research.</p> <p>Summary</p> <p>The authorization model represents a step forward in the debate about informed consent in genetic databases. The move towards an authorization model would require changes in the regulatory and legislative environments. Additionally, empirical support of the utility and acceptability of authorization is required.</p> |
| first_indexed | 2024-12-14T11:55:21Z |
| format | Article |
| id | doaj.art-792d1e588a0e4f49960df826988ab9e0 |
| institution | Directory Open Access Journal |
| issn | 1472-6939 |
| language | English |
| last_indexed | 2024-12-14T11:55:21Z |
| publishDate | 2003-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Ethics |
| spelling | doaj.art-792d1e588a0e4f49960df826988ab9e02022-12-21T23:02:07ZengBMCBMC Medical Ethics1472-69392003-01-0141110.1186/1472-6939-4-1DNA databanks and consent: A suggested policy option involving an authorization modelDaar AbdallahUpshur Ross EGCaulfield Timothy<p>Abstract</p> <p>Background</p> <p>Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material.</p> <p>Discussion</p> <p>In this paper, we discuss the difficulties of an informed consent model for future ineffable uses of genetic data. We argue that variations on consent, such as presumed consent, blanket consent or constructed consent fail to meet the standards required by current informed consent doctrine and are distortions of the original concept. In this paper, we propose the concept of an authorization model whereby participants in genetic data banks are able to exercise a certain amount of control over future uses of genetic data. We argue this preserves the autonomy of individuals at the same time as allowing them to give permission and discretion to researchers for certain types of research.</p> <p>Summary</p> <p>The authorization model represents a step forward in the debate about informed consent in genetic databases. The move towards an authorization model would require changes in the regulatory and legislative environments. Additionally, empirical support of the utility and acceptability of authorization is required.</p>http://www.biomedcentral.com/1472-6939/4/1 |
| spellingShingle | Daar Abdallah Upshur Ross EG Caulfield Timothy DNA databanks and consent: A suggested policy option involving an authorization model BMC Medical Ethics |
| title | DNA databanks and consent: A suggested policy option involving an authorization model |
| title_full | DNA databanks and consent: A suggested policy option involving an authorization model |
| title_fullStr | DNA databanks and consent: A suggested policy option involving an authorization model |
| title_full_unstemmed | DNA databanks and consent: A suggested policy option involving an authorization model |
| title_short | DNA databanks and consent: A suggested policy option involving an authorization model |
| title_sort | dna databanks and consent a suggested policy option involving an authorization model |
| url | http://www.biomedcentral.com/1472-6939/4/1 |
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