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At least 649 records · Page 36Linked to original sources
PubMed2001

Privacy, families, and human subject protections: some lessons from pedigree research.

Studies that involve getting information from people about other people, including pedigree studies, create obligations to those other people. Defining them as "human subjects," however, does not solve the ethical problems and will, in some cases, make important lines of study impractical or even impossible. The more important task is to define what the ethical obligations are and how to ensure that they are carried out. Some heuristics based on the study of families with inherited Alzheimer's disease suggest that consultation with family members and attention to confidentiality should more directly address the ethical problems than try to treat families merely as collections of people with individual rights. The individual-based approach will necessarily fail when different family members differ in their judgments about the risks and benefits of disclosing information, which will, in turn, lead to the most restrictive individual controlling what others in the family can disclose. This solution is unlikely to be supported in practice by families or researchers or to be sanctioned by the courts. The current policy of the federal Office for Human Research Protections, based on an interpretation of the definition "human subject," is incoherent and will need to be changed, preferably through a process that involves broad debate among all stakeholders but most particularly involving members of families being studied.

Alzheimer Disease↗
PubMed2000

Email, voicemail, and privacy: what policy is ethical?

Business people repeatedly asked Computer Professionals for Social Responsibility (CPSR) to recommend a policy to deal with email and voicemail. After many such requests to our organization, we attempted to construct guidelines that we could endorse. This paper outlines the guidelines that we proposed and the public reaction to them. The paper discusses the tensions inherent in a business environment, and the means of identifying ethical behavior for both companies and their employees.

Commerce↗
PubMed1996

Consciousness, privacy, and information.

The challenges for a scientific study of conscious experience are discussed, as well as the importance of such research for the foundations of information science. A three pronged approach to the investigation of consciousness and its functions is suggested.

Consciousness↗
PubMed2001

Privacy lost.

Explore the source record for details and available documents.

Confidentiality↗