Consent to Publicly Publish Personally Identifiable Information
You or your child is taking part in as a support group (Outreach Department) member in Freeman-Sheldon Research Group, Inc. This is an informed consent form to publish photographs and other personally-identifiable information publicly. Please review it carefully. If you have any questions, please contact our Ethics and Legal Department Director, Andrew A. Sabak, MS; his contact information is at the bottom of this notice.

Explanation of Request
Publishing may be in the form of a medical article (publication), slideshow for a scientific talk, social media web posting (i.e. Facebook), web log posting (i.e. Blogger post), brochure, or any other publicly available print or electronic media source. The picture of your/your child’s face will allow others to identify you/your child if the photograph is published or presented in a medical talk.

Compliance
• The person wishing to publish the personally-identifiable information publicly may be an FSRG faculty or staff member or student. The person may be you, but either way, it is against privacy laws protecting personally-identifiable information and FSRG policy to permit such publishing of personally-identifiable information publicly before formal, informed consent has been given by the responsible adult connected to the patient whose personally-identifiable information would be published publicly.

Assurance
• No information of any type will be sold, shared, or otherwise transferred to a third party, irrespective of their desired use, whether non-commercial or commercial. You may contact FSRG with any questions or concerns now and in the future. You/your child may also withdraw any and all permission at any time, even if you/your chiid sign this consent/assent form. Please tell the research doctor if you/your child choose to withdraw permission for the storage or use of the personally identifiable information.

Use and Disclosure Not Requiring Specific Informed Consent
• Publicly published personally-identifiable information about you/your child, even if you publish it yourself, becomes property of and may be part of FSRG's medical records, as well. FSRG also reserves the right to use publicly published personally-identifiable information for all ethics-approved, responsible non-commercial uses.

Changes to this Notice and Right to Request a Hard-copy
• We may change our policies at any time. Changes will apply to medical information we already hold, as well as new information after the change occurs. Before we make a significant change in our policies, we will change our notice and post in our facilities and on our Web site at fsrgroup.org.
• You can receive a copy of the current notice at any time. The effective date is listed at the end. Copies of the current notice will be available each time you come to our facility. You will be asked to acknowledge in writing your receipt of this notice. You may receive a paper copy of this Notice from us upon request, even if you have agreed to receive this notice electronically.

Complaints
• If you are concerned that your privacy rights may have been violated, or you disagree with a decision we made about access to your records, you may contact our Privacy Officer listed below. If you are not satisfied with our response, you may send a written complaint to the US Department of Health and Human Services Office of Civil Rights. Our privacy officer can provide you the address. Under no circumstances will you be penalised or retaliated against for filing a complaint.

Please indicate your preferences regarding publicly publishing personally identifiable information (including photographs) by signing and checking the appropriate boxes below.

FULL PERMISSION: Researchers can publicly publish personally-identifiable information (including photographs) about my/my child for all ethics-approved non-commercial purposes. *
This also includes self-publishing on social media sites connected with FSRG. If you wish or think you may wish to post on these sites and potentially include any personally-identifiable information (including photographs), you need to select this option. This is because information published on social media sites is unsecured and unrestricted, so conceivably anyone could reuse the information for any reason.
LIMITED PERMISSION: Researchers may publicly publish personally-identifiable information (including photographs) about my/my child's for research only. *
This also includes self-publishing on social media sites connected with FSRG. You may post on these sites, if you select this option, but you may not post any personally-identifiable information (including photographs).
LIMITED PERMISSION: Researchers may publicly publish personally-identifiable information (including photographs) about my/my child's for education only. *
This also includes self-publishing on social media sites connected with FSRG. You may post on these sites, if you select this option, but you may not post any personally-identifiable information (including photographs).
NO PERMISSION: Researchers may not publicly publish personally-identifiable information (including photographs) about my/my child's for any reason. *
This also includes self-publishing on social media sites connected with FSRG. You may post on these sites, if you select this option, but you may not post any personally-identifiable information (including photographs).
OPTIONAL: I would like to review the publicly published personally-identifiable information (including photographs) prior to submission for publication or use in l scientific presentations. *
OPTIONAL: I would like to receive a copy of the publication if my/my child's publicly published personally-identifiable information (including photographs) is used in the publication. *
Acknowledgement of Receipt of Consent to Publicly Publish Personally Identifiable Information *
In signing below, I affirm that I (1) have received a copy of the consent to care and treatment; (2) read and understand the consent; and (3) agreed to comply and be bound by the consent. If you do not agree, state 'NA'.
Your answer
Patient Name *
If the patient signed, state 'self'.
Your answer
Patient Date of Birth *
Your answer
Relationship to Patient *
If patient signed, state 'NA'.
Your answer
Reason for Refusal to Sign *
If not refused, state 'NA'.
Your answer
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