The Disclosure Decision

When people first learn that they cannot have a child using their own eggs or sperm, they are often overwhelmed by a sense of loss. Many patients feel that their dream of becoming a mother or father using their own genes has been taken from them. At the Alta Bates IVF Program we acknowledge the pain of not having a genetic link to a child and understand the need to grieve for this profound loss. After you have gone through the grieving process and feel ready to resume building your family using donated gametes, we are here to guide you through this novel terrain.

Gamete donation is a good choice for couples who believe that families are created by love, commitment, and responsibility, that parenting requires active involvement and nurturing, and that relationships are more important than genetic ties as the force which holds a family together.

After choosing gamete donation, many questions come to mind: Do we tell our child(ren)? When and what do we tell our child(ren)? Do we tell friends and family? It is common for couples to be initially concerned about revealing the use of donor eggs or sperm to their offspring. They may worry that the child could be confused about his or her identity, and possibly fail to bond with, or even reject, his or her parents because of the lack of a genetic link.

Parents may be concerned that their child(ren) may be stigmatized by others and fear that the social acceptance of gamete donation is not as widespread as one might wish. Some couples believe that secrecy will protect their child and that disclosure may hurt their family bonds. Other would-be parents value the privacy of their reproductive choices and see little benefit in disclosure.

In actuality, both openness and secrecy affect families, often in unpredictable ways. In this complex area no definitive studies can ever be applicable to all situations. Although privacy has been the standard of practice for decades, there has been a recent shift toward openness. The Ethics Committee of the American Society for Reproductive Medicine has come to advocate informing children of their donor origins “to protect the interests of the offspring.” In several western European countries, including Sweden and the United Kingdom, children conceived with donor gametes are entitled by law to find out the identity of the donors upon reaching maturity.

Secrets tend to produce stress and tension in families and may negatively impact the parent-child bond. Genetics play an important role in a person’s developing physiology and psychology, and withholding factual genetic information might hinder an individual from making good medical decisions.

Maintaining secrets over a lifetime is difficult. If you choose not to tell your child(ren) that donor eggs or sperm were used in their conception, you must not tell anyone else about it either. Friends and family members cannot be expected to keep your secret for a lifetime and they may accidentally reveal that fact in a hurtful way. A teenager studying genetics in high school may discover that his/her blood type or DNA fingerprints don’t mesh with those of his parents, and thus put the pieces of the puzzle together. If a child discovers the truth about his donor origins without the support of his parents, he may lose trust and feel betrayed. He or she may conclude that his parents withheld information because they felt uncomfortable with and ashamed of the donation. Consequently, the child may come to feel badly about himself and may wonder what other information has been withheld.

In contrast, openness encourages children to ask questions, provides accurate health information, and allows parents to help their children understand their family story. Many people believe that it is a basic human right for a person to know his own genetic heritage.

When children are brought up in a safe and loving environment, they develop confidence, a sense of belonging, and attachment to their parents. A child knows that his parents are the people who love, care for, play with, and protect him or her. It is unrealistic to think that a child’s bond with his parents will disappear if the child discovers his donor origins. It is more likely that a child will enlist his parents’ help to understand what it means to be born with the assistance of another person.

Disclosing origins to children is a process that occurs over a child’s lifetime because questions change as children develop emotionally and cognitively. Many professionals advocate telling children the story of their origins at an early age. The child always will know the truth about his family and there will be no secrets between parent and child. The story for a young child involves three parts; the desire of parents to have a family, the need for another person to help make a baby; and the love for the child they have. Adolescents understand the complexities of genetics, appreciate the meaningful tie they have with the donor, and likely will have questions about how donor origins affect their identity. They will need the help of their parents in their quest to understand themselves. Disclosure is a continuing story about loving and helping your child.

Despite these potential advantages of openness and disclosure, many families live within social, cultural and religious environments where infertility treatments, let alone the use of donated gametes, are not met with acceptance. It is entirely understandable that, in these situations, parents may choose to keep their choice of donor eggs, sperm or embryos private rather than to put that burden upon their offspring. While there is a trend towards openness in many developed countries, not all societies move in the same direction or at the same speed.

Ultimately, disclosure remains one of the many difficult decisions faced by parents in the course of raising children and people have unique feelings about this subject. At the Alta Bates IVF program we pass no judgment on your decision. Our role is to wholeheartedly support you in whatever approach is best for your family.


Madison

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