Word: cdf
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Dates: during 1970-1979
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...nebulous nature of just how informed this informed consent was became a major issue in the effort to halt the research. It was also the issue that attracted the attention of two outside organizations: the Washington-based Children's Defense Fund (CDF) and the Massachusetts Advocacy Center. Informed consent was a legal consideration, not as important to Science for the People as the political matters at the heart of research, but critical to CDF, a group whose concerns include the rights of children who are the subjects of medical experimentation. "The legal issue, while the narrowest, was also the best...
...vagueness of the form was particularly offensive to the CDF. William C. Smith '55, director of CDF's medical experimentation project, explains that failure to inform XYY parents of the potential "risks" associated with their child's development is deceptive and unethical, because the parents are not told of the true nature of the research. On the other hand, Smith says, to inform the parents fully of aberrant behavior they allegedly could anticipate is equally unethical and unfair to an innocent child. Such behavior patterns have not been documented, and saddling a child's parents with such a hobgoblin might...
...less lofty concern of the Mass Advocacy Center with the legal issues in the case brought the office of Massachusetts Attorney General Francis X. Bellotti into the matter last spring. Larry Brown, from the advocacy center, says that the center and CDF threatened Walzer with suit. "We stuck smartly to the legal issues and avoided medical issues," Brown recalls...
...CDF, the advocacy center, and Science for the People would all like to take credit for the end to screening because it would demonstrate for them the legitimate right of the public to affect the academic research it funds...
Neither the CDF nor the Advocacy Center was satisfied with the medical establishment's seeming disregard for the concept of informed parental consent, and Beckwith's continued agiatation on those political issues--notably clinical genetics and "psychotechnology"-- that he does not want to be "medicalized" has earned him enemies on the medical faculty...