Office of Social Services Policy
Screening and Assessment in TANF/Welfare-to-Work: Ten Important Questions TANF Agencies and Their Partners Should Consider
U.S. Department of Health and Human Services Screening and Assessment in TANF/Welfare-to-Work: Ten Important Questions TANF Agencies and Their Partners Should Consider Executive Summary
Terri S. Thompson, Asheley Van Ness and Carolyn T. O'Brien The Urban Institute December 2001
The Lewin Group, Inc. Berkeley Policy Associates, Cornell University
Article 25 deals with the movement of data, by whatever means, from E.U. Member States to other countries. ¶ 1. The Member States shall provide that the transfer to a [non E.U.] country of personal data which are undergoing processing or are intended for processing after transfer may take place only if ... the [recipient] country in question
In contrast to the U.S., most European countries have for some years had in effect broad data- protection laws, based on human rights principles. All focus on personally identifiable data. Most deal with legitimacy of need-to-know; with notification of data-subjects, and consent; with data-subject rights, such as the right to examine data about on
External ethical oversight provides additional protection for research subjects. Prime examples in the U.S. are the Institutional Review Boards (IRBs) that supervise human-subjects research conducted under Federal jurisdiction, which is very broad. IRBs are carefully constituted boards that conduct independent oversight of research. 73
A universally endorsed ethical precept is that it is permissible to collect and use personally identifiable data, if the data-subject agrees to the conditions of data protection and use. The ideal is prior, informed, freely granted, specific consent . Researchers strive for this to varying degrees, and achieve it to varying degrees. 68,
Much very useful health research is performed on completely anonymized data. If for a particular research project there are no compelling reasons for retaining at least potential identifiability, anonymized data should be used. Though this injunction might sound unnecessary, it is stated here because often, data with identifiers are used just beca
A prime example of innovation is the elaborate work of developing and improving the use of pharmaceuticals, medical devices, diagnostic instruments and tests, vaccines, and other "tools" of health care. 53 After much preliminary screening, an experimental entity or procedure is subjected to a long series of clinical trials , perhaps on tens of
Whether or not they are to be considered "research," a classic category of investigations have to do with coping with disease outbreaks and epidemics, and with other emerging or emergency threats.
All over the world, health and disease are monitored. Starting with prenatal observations and birth data, throughout life health-related measurements and observations accumulate. Analyses are made to portray the "natural history" of diseases and disabilities—how they start, progress in a person or spread to others, and run their courses. Also an
Health data are zipped around the world all day every day, by government research agencies, pharmaceutical firms, academic researchers, and many others. Data on Americans are transferred, American institutions do much data-transferring, and data are transferred for important American purposes.
Just as varied as the types of health data, of course, are the types of individuals and organizations who hold or process the data. Data are processed by:
Several current changes in the context within which health data are collected and used must be recognized. First, the boundaries between classical medical care and "public health" are becoming ever less distinct. Over the past decades the rubric, "health," has been broadened to include many matters—from hyperactivity in children, to teenagers' n
This study takes it as given that because members of society benefit greatly from health research, research— if it is for justifiable purposes, and is conducted with proper protection of subjects —must continue to be allowed controlled access to individuals' health data.
Wrongful disclosure of confidential health data may occur either through carelessness— through gossip in a clinic, for instance, or lazy discarding of clinical records—or through deliberate transgression, either by someone associated with the data-holder or by an outsider.
The ethos surrounding research on humans was recast and codified after World War II, as the world coped with the revelation of the medical atrocities perpetrated by the Nazis. The resulting "Nuremberg Code"—the opening sentence of which was, "The voluntary consent of the human subject is absolutely essential"—established principles having to d