BMC Medical Ethics 4 (1):1-4 (2003)

Background 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. Discussion 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. Summary 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.
Keywords info:mesh/Advance Directives  Humans   Duty to Recontact   Genetic Research   Informed Consent   Advance Directives   Presumed Consent   Public Policy   Databases, Genetic   Research Subjects  info:mesh/Informed Consent  info:mesh/Duty to Recontact  info:mesh/Databases, Genetic  info:mesh/Humans  info:mesh/Research Subjects  info:mesh/Presumed Consent  info:mesh/Genetic Research  info:mesh/Public Policy
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DOI 10.1186/1472-6939-4-1
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The Role of IRBs in Research Involving Commerical Biobanks.Mark A. Rothstein - 2002 - Journal of Law, Medicine and Ethics 30 (1):105-108.

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Can Broad Consent Be Informed Consent?M. Sheehan - 2011 - Public Health Ethics 4 (3):226-235.
Broadening Consent--And Diluting Ethics?B. Hofmann - 2009 - Journal of Medical Ethics 35 (2):125-129.
Health Research with Big Data: Time for Systemic Oversight.Effy Vayena & Alessandro Blasimme - 2018 - Journal of Law, Medicine and Ethics 46 (1):119-129.

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