Improving Access to and Confidentiality of Research Data Report of a Workshop (2000) / Chapter Skim
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3 Ethical and Legal Requirements Associated with Data Dissemination
3 Ethical and Legal Requirements Associated with Data Dissemination
Pages 18-28
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From page 18... ...
. ETHICAL ISSUES Mary Ann Baily described underlying ethical issues raised by the use of microdata, especially longitudinal data that are linked to administrative records.
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From page 19... ...
Gostin ( 1995:514) highlights the importance of respect for privacy to the development of a sense of self and personhood: "It is difficult to imagine how, in the absence of some level of privacy, individuals can formulate autonomous preferences, or more basically, develop the capacity to be self-governing." A lack of respect for privacy makes people reluctant to trust others with personal information; for example, they may conceal sensitive information needed by their physicians to provide effective treatment.
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From page 20... ...
Since unrestricted access can cause harm to individuals and also conflicts directly with respect for individual autonomy, it is not an appropriate policy. On the other hand, requiring explicit, informed consent for any access to personally identifiable data is also problematic.
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From page 21... ...
Therefore, a balance must be struck between the right to be left alone and the obligation to cooperate in the pursuit of societal goals. According to Baily, the appropriate policy is somewhere in between unlimited access to personally identifiable data and access only with explicit informed consent, with the chosen policy being supported by sufficient security to maintain confidentiality.
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From page 22... ...
This level implies a category of"ordinary" research uses producing substantial social benefits with a low risk of harmful disclosure. For research in this category, there is no obligation to notify data subjects about each use or to seek explicit consent, although there should be a way for subjects to learn what research is being done with the data if they wish to do so.
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Speaking primarily about health data, Eden observed that coordinated federal privacy legislation to protect health records does not yet exist. This is somewhat of a surprise, given that Congress has been working to enact
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From page 24... ...
The primary laws governing data access are the Freedom of Information Act, the Privacy Act, privacy and confidentiality laws specific to individual agencies or purposes, and state laws. The wide variability in statutes governing access to administrative records nationwide makes it difficult for researchers and others to understand applicable rules.
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These regulations will be based on recommendations for privacy legislation prepared by the Secretary for Congress in 1997. Statutory language requires that the privacy regulations address (1)
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The IRB is charged with judging whether risks to data subjects are "reasonable" in relation to the anticipated benefits of data release and whether the risks are minimized by a sound research design, as well as with ensuring that informed consent is acquired and that confidentiality protections underlying data dissemination are adequate. With regard to federally mandated informed consent, regulations require that subjects be notified about the degree to which the confidentiality of their records will be maintained.
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From page 27... ...
The risks are real, but difficult to quantify. Frequently, IRBs are advocated in proposed legislation as the vehicle for resolving data access and confidentiality tensions.
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From page 28... ...
In acting as the responsible gatekeeper, the host IRB could provide information to local IRBs that would help streamline the approval process. Researchers could submit judgments from the overseeing IRB, demonstrating to the local IRB that a knowledgeable, respected body has approved confidentiality protections.
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