We want the maximum good per person but what is good? To one person it is wilderness, to another it is ski lodges for thousands. To one it is estuaries to nourish ducks for hunters to shoot to another it is factory land. Comparing one good with another is, we usually say, impossible because goods are incommensurable. Incommensurables cannot be compared.
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Many IRBs have little sense of the range of privacy issues they should consider or of the range of solutions that might be employed in the service of valid and ethical research. Many IRB chairs, members, and staff persons are not in a position to effectively guide or teach their clientele, or to gain the respect of their clientele. Other IRBs are able to do a remarkably effective job of teaching and guiding their clientele. This section will be devoted to discussion of current practices of highly effective IRBs.
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The key recommendations of this report are that more useful definitions of privacy and confidentiality be given in the Common Rule and that two educational web sites be developed structured similarly to the Help menu of Microsoft Word. The small web site would guide IRBs in locating and structuring helpful materials and resources tailored to their specific location. The major web site would provide education and information needed by IRBs, researchers, and students, as well as teachers of research methodology who wish to use these materials for instructional purposes.
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No IRB can be expected to embody all of the scientific competencies needed to help craft the best protocols for all research projects. However, an educational resource, including a list of consultants by research topic, can be developed that would make it relatively easy for IRBs and investigators to locate the information they need in order to develop effective protocols. This would remove the IRB from the hostile role of ethics police and place it in a more professional and constructive role.
The most important aspect of necessity that we must now recognize, is the necessity of abandoning the commons in breeding. No technical solution can rescue us from the misery of overpopulation. Freedom to breed will bring ruin to all. At the moment, to avoid hard decisions many of us are tempted to propagandize for conscience and responsible parenthood. The temptation must be resisted, because an appeal to independently acting consciences selects for the disappearance of all conscience in the long run, and an increase in anxiety in the short.
FERPA applies to educational agencies or institutions that receive federal funds under any program administered by the Department of Education. This includes all public elementary and secondary schools and virtually all post-secondary institutions.
How can researchers learn what is private in cultures and contexts that are foreign to their own personal experience? One solution is to employ research assistants from the same cultural community as the subjects. However, this sometimes risks a breach of confidentiality (disclosure of personal secrets) within a close-knit community. Correspondingly, subjects sometimes disclose more sensitive information to a stranger who has established appropriate rapport and promised confidentiality than to a member of their own group. The optimal solution to this problem rests on judicious selection and training of research assistants - training that is designed to produce the most culturally sensitive behavior possible without any actual or apparent risk to confidentiality within the community.
"I wouldn't approve of it," he said. "I was brought up with these values, and it's been in my blood. I would tell any young man that's part of the Orthodox religion not to get involved with a non-Jewish woman. The pain is too much, as is the family destruction."
Recall the game of tick-tack-toe. Consider the problem, "How can I win the game of tick-tack-toe?" It is well known that I cannot, if I assume (in keeping with the conventions of game theory) that my opponent understands the game perfectly. Put another way, there is no "technical solution" to the problem. I can win only by giving a radical meaning to the word "win." I can hit my opponent over the head or I can drug him or I can falsify the records. Every way in which I "win" involves, in some sense, an abandonment of the game, as we intuitively understand it. (I can also, of course, openly abandon the game--refuse to play it. This is what most adults do.)
In his apartment on 86st Street, the dozens of conversations finally came to one final talk, one final night they would spend together. Holding each other, crying, knowing that this night would be their last, it was more painful and tormenting, perhaps, for him, than it was for her, because he was the one making the decision.
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