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Compared with data that is initially collected for research purposes, the mandatory authorization of a government database for secondary use deserves greater scrutiny because it consists of information that is collected initially for administrative purposes. Using the case of Taiwan's National Health Insurance (NHI) Database as an example, this paper analyzes the ethical issues that emerge when the research participants are "participated" in studies without their consent, according to the current policy. The proponents of secondary use for research purposes maintain that the authorized use of the NHI Database is necessary for public interests, while the opponents argue that the potential lack of democratic accountability and the infringement on people's rights to privacy and information autonomy is unwarranted. Drawing on the solidarity-based approach, this paper proposes a temporal solution as a possible reform direction for better ethical justification of the secondary use of the NHI Database.
This article was published in the following journal.
Name: Developing world bioethics
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Voluntary authorization, by a patient or research subject, with full comprehension of the risks involved, for diagnostic or investigative procedures, and for medical and surgical treatment.
Voluntary authorization by a person not of usual legal age for diagnostic or investigative procedures, or for medical and surgical treatment. (from English A, Shaw FE, McCauley MM, Fishbein DB Pediatrics 121:Suppl Jan 2008 pp S85-7).
Informed consent given by someone other than the patient or research subject.
Informed consent given by a parent on behalf of a minor or otherwise incompetent child.
An institutional policy of granting authority to health personnel to perform procedures on patients or to remove organs from cadavers for transplantation unless an objection is registered by family members or by the patient prior to death. This also includes emergency care of minors without prior parental consent.