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Should Children Conceived Using Donor Gametes Be Told About Their Genetic Origins?
Spring 2007

Scientific advances have given us multiple options for making a baby. They include IVF, surrogacy and donor gametes among others. In fact one physician has described 16 different ways to make a baby! In spite of these changes for many the societal norm is still considered to be a married, heterosexual couple who are both genetically related to their offspring. This leads some to hypothesize that deviations from this norm may result in psychological and possibly physical harm to the child. Consider the following citation from two mental health professionals in the field, “Though our society loves children and places a high premium on parenthood, it is still ambivalent about creating families in non-traditional ways.” For this very reason many couples considering the use of donor gametes struggle with the decision to tell or not tell their child a donor was used because they are not sure what is best for the child and want to spare the child any psychological harm.

It is not surprising that recipient couples are confused since the topic is the subject of much debate among clinicians as well, although the majority of mental health professionals appear to favor openness. Even the vernacular used by mental health professionals in the field has changed over the years and the word “secrecy” has been replaced with, “privacy” or “non-disclosure” and for good reason. Webster’s Dictionary defines a secret as, “kept from the knowledge of others; hidden.” Yet the word secret may also have negative connotations. Consider the following synonyms found in Roget’s Thesaurus for the word secret: enigma, dark, mysterious, shrouded. These words do not encourage exploration of feelings an integral step in the decision making process for prospective parents choosing this reproductive option.

There are two fundamental issues to consider when discussing openness and privacy. Does the child have a right to know his/her genetic origins or do the parents have the right to keep the information private. There are strong arguments to be made for either choice but ultimately the parent/s must decide what is best for them and their children. Unfortunately, the literature suggests a lack of post-donation guidance that would be helpful. There is one issue on which the experts all agree; if a couple is not sure they will disclose the use of donor gametes to their child they should be very careful with whom they share the information since the risk of unintentional disclosure increases with each person who knows.

The arguments for disclosure include the following:

  1. Children have a fundamental right to know about their origins
  2. Medical information is crucial and withholding this information can be detrimental to a child
  3. Secrets are lethal and can cause permanent damage to the child and the family (based on adoption literature suggesting parents and children do better when these issues are discussed openly)
  4. Children born using donor gametes will sense that there is something different about them

As noted, many proponents of disclosure cite adoption literature, describing the evolution from secrecy to openness and the benefits to the child when the information is shared. However the argument can be made that adoption is very different from gamete donation since a child was not “given up or surrendered by his parent” he/ she will not have the abandonment issues to work through. Another reason cited for openness is a potential breach of the trust between parent and child that will occur if the child finds out inadvertently that a donor was used.

The arguments in favor of non-disclosure include the following:

  1. Children do not have a fundamental right to know about their origins
  2. The donor’s medical history can be incorporated in the family history
  3. All families have secrets; parents choose are always deciding what information to share with their children and what information to keep private
  4. If the home in which the child is raised is loving and the parents are unconflicted the child will not sense any differences
  5. Privacy appears to be working with families using sperm donation (based on the absence of problems reported to clinicians) who historically do not disclose the use of a donor

In an ideal world we would all embrace and accept our differences but sadly this doesn’t always happen. Parents who choose not to tell their children may be doing it out of genuine concern for their child’s welfare because they wish to spare them prejudice or rejection from family, peers and the community who might not understand and ostracize the child. Secrets are relatively easy to keep when the child is young but may become increasingly difficult to keep as the child gets older and keeping secrets may be burdensome for parents over a lifetime.

Probably the most important thing to remember is that disclosure in not a one-time event and like gamete donation itself it is a process that evolves over time. Making a decision of this importance should probably not be made in the throes of a life crisis since attitudes can change from one stage to the next. Moreover, not knowing how or when to disclose, the attitudes of the clinicians treating a couple, their families of origin, their cultural mores and religious beliefs can impact a couple’s decision. The use of an anonymous versus a known donor can also impact the decision. Finally the passage of time itself and where in the process the couple is may change their opinion. One author suggests that disclosure is linked to the recipient’s welfare meaning those who see gamete donation as a positive decision tend to be more open compared to those who “need to resort to” gamete donation. These people may feel it challenges their masculinity /femininity which in turn cause them to disguise their problem and the truth about their child’s conception.

In conclusion, the quality of the relationship between parent and child has less to do with genetic relatedness and more to do with how securely a child is attached to their parents. Attachment develops when the parent is warm, sensitive, caring and responsive to their child’s needs. The literature suggests that families created using donor gametes are faring well whether they choose privacy or openness. Experience demonstrates that couples considering this option are typically highly motivated and desperately want a baby however choosing the donor gamete option requires preparation and for this reason couples are typically referred to a mental health professional (MHP) for psycho-educational counseling. Patient support groups like the American Fertility Association and Resolve can also provide helpful tools for prospective donor parents such as literature and online support. Be sure to look for a follow-up article in this newsletter which will discuss how to tell your child they were conceived with donor gametes.

References:
Baran A, Pannor R. Lethal secrets. New York: Amistad, 1993.

Braverman A. Oocyte donation:psychological and counseling issues. Clinical Consultations in Obstetrics and Gynecology 1994; 6: 143-49.

Golombok S, Brewaeys A, Giavazzi M, Guerra D, MacCallum F, Rust J. The European study of assisted reproduction families: the transition to adolescence. Hum Reprod 2002; 17; 830-40.

Greenfeld D. Recipient counseling for oocyte donation. Recipient counseling for donor insemination. In: Burns L, Covington S editors. Infertility counseling. New York: The Parthenon Publishing Group; 1999. p. 345-56.

Mahlstedt P, Greenfeld D. Assisted reproductive technology with donor gametes: the need for patient preparation. Fertil Steril. 1989;52: 908-14.

Roget’s Twenty-first Century Thesaurus. New York: Dell Publishing, 1992.

Seibel M. Prologue. In: Siebel M Crockin S, editors. Family building through egg and sperm donation: medical, legal and ethical issues. Boston: Jones and Bartlett, 1996; xiii.

Shenfeld F, Steele S. What are the effects of anonymity and secrecy on the welfare of the child in gamete donation? Hum Rep 1997; 12: 392-95.

Van den Akker O. A review of family donor constructs: current research and future directions. Hum Rep 2006; 12: 91-101.

Webster’s Dictionary. Danbury: Lexicon Publications, Inc, 1993.

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