• Security procedures “should be commensurate with the sensitivity of the information recorded.”

Helgesson and colleagues (2007) suggest a similar framework that seeks to balance individual risks against the value of research. To weigh the risks and benefits, the authors suggest use of an ethics review board. If no previous consent or refusal exists and the study “is not particularly sensitive … genetic analyses of identifiable samples should be permitted without [new] consent” provided that there is strict coding, secrecy laws apply, and “vital research interests are at stake” (p. 975).

If the JPC continues to collect biospecimens and associated data, it will need to determine what kind of consent is appropriate for the research use of the newly acquired materials and the extent (if any) to which it can suggest or even prescribe language regarding consent to use materials submitted to it in subsequent research. A schematic presentation of the arguments for and against different types of consent is presented in Table 3-3.

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