2. RECIPIENTS 2.1 In what circumstances (if any), will you share the findings with the subject’s healthcare provider? 2.2 For subjects who are children: Describe who will receive the findings and at what age (if at all) the children will receive findings directly. What is your reason for this plan? For example, your justification include the age of onset of a condition and the availability of monitoring, or therapeutic interventions. 2.3 Will you share findings about deceased subjects with a surviving relative? Why or why not? 3. DISCLOSURE PROCESS 3.1 When in the research process will you share the findings? 3.2 Will you be able to return any findings obtained after the end of the study funding (if there is any)? If yes, for how long after the end of the funding? 3.3 How will you disclose the findings to the subjects (including any children), family members, and/or healthcare providers? Your answer should address: the qualifications of the person who will communicate the results and the method used to communicate. 3.4 What resources (if any) will be available for discussion and interpretation of the finding, and what will you do to reduce the likelihood of misunderstanding the meaning of the information? For example, will you provide any counseling or referral to counseling? 3.5 Describe the resources, infrastructure, and logistics that will support the process of returning individual results. 3.6 If it may take a long time to develop some findings, how will you ensure that you have current contact information for the subjects? 3.7 How will you ensure that findings are not returned to the person? Be specific.
2. RECIPIENTS 2.1 In what circumstances (if any), will you share the findings with the subject’s healthcare provider? 2.2 For subjects who are children: Describe who will receive the findings and at what age (if at all) the children will receive findings directly. What is your reason for this plan? For example, your justification include the age of onset of a condition and the availability of monitoring, or therapeutic interventions. 2.3 Will you share findings about deceased subjects with a surviving relative? Why or why not? 3. DISCLOSURE PROCESS 3.1 When in the research process will you share the findings? 3.2 Will you be able to return any findings obtained after the end of the study funding (if there is any)? If yes, for how long after the end of the funding? 3.3 How will you disclose the findings to the subjects (including any children), family members, and/or healthcare providers? Your answer should address: the qualifications of the person who will communicate the results and the method used to communicate. 3.4 What resources (if any) will be available for discussion and interpretation of the finding, and what will you do to reduce the likelihood of misunderstanding the meaning of the information? For example, will you provide any counseling or referral to counseling? 3.5 Describe the resources, infrastructure, and logistics that will support the process of returning individual results. 3.6 If it may take a long time to develop some findings, how will you ensure that you have current contact information for the subjects? 3.7 How will you ensure that findings are not returned to the person? Be specific.
ZIPLINE-SUPPLEMENT-Participant-Results-Sharing.docx