XIV. General Concerns from Summary Discussion

Several concerns were highlighted by the working group for consideration:

(1) It is important to consider the implications of signing a form that indicates that consent is obtained but that doesn't reveal all of the consent information within the signature document. (2) It is important to consider how to ensure understanding by the potential subject of the concept of utilizing current samples for future genetic studies. (3) Would a videotaped consent be legal and how could one assure confidentiality of the consent if it exists in videotape linking the person's image to the consent? (4) How can one ensure that interpreters would not be used as witnesses? (5) Group members expressed a concern about the effect of uses of genetic study data on attitudes and behaviors of groups. (6) It was emphasized that the consent form needs to clarify abstract ideas. (7) In response to concern about understanding future use of samples, it was suggested that the form should contain two clear statements that people could sign saying they either are willing to allow future use of their samples or they are not willing. If they are not willing, it was noted that the samples should be destroyed.

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