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• When children reach the age of majority under the applicable law of the jurisdiction in which the research will be conducted (18 years of age at the CC), they must provide consent in order to continue participation in the research, unless consent is not required (e.g., for certain exempt research) or, alternatively, a waiver of consent must be approved by the IRB.
• If the child who has reached the age of majority lacks the capacity to consent to the research, the NIH investigator will follow the requirements summarized below and in

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• in Policy 403 Research Involving Adults Who Lack Decision-making Capacity to Consent to Research Participation

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  unless the IRB has waived consent.

• This requirement applies not only when you will continue to interact directly with the now-adult subject but also whenever the protocol continues to meet the regulatory definition of "human subjects research." For example, if your protocol involves only the continued analysis of specimens and/or data for which the subject's identity is readily identifiable to you, then you need to seek and obtain the legally effective informed consent of the now-adult subject unless the IRB approves a waiver of consent.

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