n HOW TO DECIDE IF FERTILITY PRESERVATION IS RIGHT FOR YOUR CHILD Fertility preservation is a new field of medicine and there is much to learn, especially about protecting a child or adolescent’s ability to have children after cancer treat- ment. When considering options for fertility preservation, patients and families must be aware that pregnancy may not occur, insurance may not pay for the treatment now or in the future, and the long-term effects of the treatment may not be known for years or even decades. All experimental 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 understands what is happening, he or she should also sign an assent agreeing to the procedure. When the patient turns 18 he or 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 patients over the age of 18. If the patient is younger than 18 and able to understand the proposed procedure, 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 just fulfilling 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. • If family is participating in a research study, they 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 turns 18. • The patient may decide at any time to withdraw from a study.
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