Through informed consent, research subjects are apprised about the study and about its? risks and benefits. Subjects generally are not informed their sample may be used in future studies. A 1994 consensus workshop resulted in specific recommendations about collection of human samples. Recommendations from this conference were incorporated into NHGRI consent documents related to the collection and future use of DNA samples. Options include: 1) refusal for any future use of sample; 2) permission to use sample with no identifiers; 3) desire for recontact in future studies; and 4) no restrictions on use of samples. A chart review of subjects enrolled in three NHGRI protocols was conducted to examine the options chosen by each subject. The study cohort consisted of 285 subjects from three NHGRI protocols was conducted to examine the options chosen by each subject. . Forty-four did not indicate any preference among the available options. Among the 223 people providing a choice among the four options 73% requested recontact; 26% allowed future use of their sample if stripped of identifiers 6% would permit unrestricted use of their DNA. 4% subjects would not permit use of their samples in any future studies. A protocol to assess the basis of subject preference is undergoing revision after initial IRB review.
