Experimental fertility preservation options should be done under the supervision of an Institutional Review Board. This is to protect the patient from harm and to make sure that families are not taken advantage of during a particularly stressful time. Families must sign a consent stating they understand the research being done on their child. If the child is able to understand what is happening, she should also sign an assent agreeing to the procedure. When the patient turns 18 years old she should sign a new consent. n CONSENT The process of consent may already be familiar to you if your child is about to start or has begun treatment. Consent means that you have been provided information regarding treatment, you understand the treatment, and are in agreement with the treatment plan. Any type of fertility preservation, whether standard of care or exper- imental, requires the consent of the patient if over the age of 18 years. If the patient is younger than 18 years and able to understand the procedure being proposed, the parent(s) will give permission and the child will assent. There are several things to consider when giving permission for a minor child: • The parent(s) are acting in the child’s best interest and not simply meeting their desire to be a grandparent. • Children should not be coerced into a decision regarding fertility preservation • If parents cannot agree on fertility preservation, discussion with the healthcare team, social worker, and religious leader may be requested, as appropriate. • Families participating in a research study may withdraw from the study at any time. • Consent should also include what will happen to the tissue if the patient dies. • The patient will consent for banking of tissue when he or she turns 18 years. • The patient may decide at any time to withdraw from a study, if she is participating in research. n INSURANCE Insurance coverage for fertility preservation varies from policy to policy. Childhood cancer patients and survivors are not infertile, they are at risk to become infertile later in life, which can be confusing. It is best to ask about insurance coverage before the decision is made about fertility preservation. There may be charitable organizations in your community to assist with some of the costs of fertility preservation. The oncology social worker or fertility specialist may be available to provide information regarding cost assistance.
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