To Tell, or Not To Tell

Printer-friendly version

The anonymous oocyte donor had completed many IVF cycles. She was a “good” donor in that she always had many follicles, and several different patients had achieved a pregnancy using her eggs. When she returned to the clinic for a repeat cycle, a recipient who had successfully conceived thanks to her egg donation was also there. The recipient Mom had come to show the nurses her twins. Both women passed each other in the waiting room. Neither one knew the other. For the nurses, it was an awkward moment. They held their breath. They knew that the biological mother had just walked by her “children” and the recipient just walked by her donor.

There has always been controversy over the issue of disclosure to children conceived in alternative ways. In the past, donor sperm was the only form of assisted reproduction and physicians encouraged parents to keep it a secret. Today there are many forms of donor gametes, including donor sperm, donor eggs, donor embryos, as well as third party reproduction: traditional surrogacy and gestational carrier roles, separately or in combination. These alternative means of conception raise many questions about disclosure. It is no longer a simple choice of “Should we tell or not?” but, more and more often, when and what to tell. The two basic issues that are most hotly debated are (a) whether or not parents should disclose conception information, and (b) if so, at what age the child should be told.

In March 2004 the American Society for Reproductive Medicine (ASRM) ethics committee published a report supporting disclosure by parents to offspring about the use of donor gametes in their conception. While recognizing that this is a highly personal decision, with serious arguments for and against disclosure, the committee suggested that there may be an advantage in telling earlier rather than later, so the child can absorb the information over time.

Those who favour disclosure cite the lessons learned from adoptions. They see it as a matter of the child’s human and legal rights. They point out that knowing one’s biological origins is central to the development of one’s identity. They also point out the destructive effects of secrecy on family life and on the self-esteem and psychological well-being of the child, and the necessity of knowing one’s genetic history in order to obtain appropriate medical or (in some cases) psychiatric care.

In several countries, governments have accepted that argument a child’s right to know if they were conceived using donor gametes should supersede the parents’ right to privacy. Switzerland, Sweden, the Netherlands, Austria and certain states in Australia have passed laws that require access to their genetic history be granted to donor-assisted children when they come of age. The United Kingdom recently passed similar laws, which will apply to children conceived after April 2005.

In the United States, on the other hand, the federal government has yet to address the issue. Unless parents choose disclosure, a child may not know assisted reproduction or donor gametes were used in their conception.

In June 2002, the American Society for Reproductive Medicine (ASRM) issued guidelines for gamete and embryo donation. Their report recommended that gamete donations be limited to 25 pregnancies in a population of 800,000, in order to decrease the risk of consanguinity. The ASRM further stated that inadvertent consanguinity could occur if a given donor were to donate to two or more families and the offspring were unaware of their genetic heritage.

Mental health professionals express concern regarding the damage that can occur to families when parents choose non-disclosure. Can they keep the gamete donor a secret for the rest of their lives? If friends or family members know, will they keep it a secret? If just one other person knows, a couple can never be 100% sure their child will not find out accidentally. There are instances where parents opted for secrecy at first, but changed their minds later. In other cases, parents have had to tell a donor-assisted child who has developed a genetic disease because the non-genetic parent was not a DNA match. Other children have been told when the one of the parents develops a hereditary disease – in order to prevent needless testing of the offspring or anxiety about inheriting the same condition. A terminally ill parent may disclose the information to their adult child rather than die with the secret untold. Sometimes the genetic parent reveals the truth in a divorce custody battle. Or a family member may accidentally disclose to a child conceived using the donor gametes of a relative.

Couples that desperately want a child go to great lengths to achieve a pregnancy. It is very sad when a couple is told that their “bodies have failed them” and they need other medical interventions.

Accidental discovery of the truth can be devastating. A child may believe that their whole life has been a lie. It can affect how they feel about their own identity. They may wonder what else they haven’t been told. Frequently a child has picked up clues that there is a secret in the family, and often mistakenly believes that they were adopted. Adults who were told later in life have described themselves as being devastated, hurt, depressed, angry, betrayed, cheated, lost – even filled with deep hatred for their parents who kept the truth from them.

If parents agree that openness and honesty are “family values,” then they should choose disclosure. Choosing to disclose also means that they can choose when and how their child is to be told, and allows them to prevent the potentially devastating effects of accidental discovery.

Some parents, however, may feel they have good reasons for secrecy. They may delay telling their child because they do not know how to broach the subject, or because the time never seems right, or because they fear their child’s reaction. Some are ashamed of their infertility and may wish to keep it a private matter. Others may feel that it is irrelevant – that “there is no reason to tell if there’s no need to know.” They may even argue that non-disclosure is the best way to prevent the distress of their child’s discovering that one, or both of their parents, is not “real,” and the deleterious effect the child’s rejection of the non-genetic parent might have on the family relationships. They may also worry that the child will feel “different” from their friends and that will cause distress.

Pressures outside the home may also encourage secrecy. Some parents may feel a need to protect their child from the negativity of family members who disapprove of donor gametes or assisted reproduction. Or they may choose secrecy to protect the child from the stigma imposed by certain religious or social groups. Some parents believe that they may involve their child in a state of loss and frustration if they choose disclosure without proper access to the donor’s genetic history. This is a valid concern, since anonymous donation has been the norm and parents may have little information about the donor, other than a few physical and social characteristics. Parents worry that their child may feel abandoned by the donor. They often express concerns that the child will tell others, when the parents would like to maintain their privacy.

If legislation mandates disclosure, other questions arise that involve the gamete donor or third party:

·        Will there be a decrease in donors or surrogates?

·        Will genetic parents (donors) be liable for any form of child support?

·        Might there be claims to inheritance?

·        What happens if the donor or surrogate decides to claim the child as their own?

Couples that desperately want a child go to great lengths to achieve a pregnancy. It is very sad when a couple is told that their “bodies have failed them” and they need other medical interventions. They are joyous when they finally conceive through donor gametes or third party reproduction. It’s usually the end of a long, hard journey, and in the excitement of pregnancy and delivery the issue of disclosure can easily be pushed aside. Health professionals involved in assisted reproduction should educate parents about the pros and cons of disclosure and the potential repercussions of accidental discovery. Although the medical community has gradually changed its stance from promoting secrecy to encouraging disclosure, this delicate decision ultimately remains in the hands of the parents. Nonetheless, couples who have decided to use donor gametes or third party reproduction need education and emotional support, and those who feel they may want to tell their child should be counselled extensively. .

Recent literature suggests that parents should first tell their child that they were donor-assisted around three years of age when they can understand the basic concepts. A March 2005 study for the Human Fertilisation and Embryology Authority in Britain concluded that a child should be told by age three or risk psychological damage if they find out accidentally. The information can be given in a non-emotional and matter-of-fact way. If the parent presents the story in a positive light, the child is less likely to be distressed and will usually accept it as a normal part of life.

Some parents have used storytelling techniques to disclose the facts to their children by making up their own stories or using   children’s storybooks to aid them. Some parents begin to tell the story when the child is an infant. Even if the baby has no idea what is being said, it helps the parents begin to say the words. It then becomes a “rehearsal” for the future. By the time the child is old enough to understand the basic concepts, the parents have become comfortable with telling the story. As the child ages, further details can be introduced. The child then gains a progressive understanding, with no sudden, shocking revelations – and a start on the path to an open life in the future, without closed doors. 

About the author: Janice Grimes is a Registered Nurse and currently works in an IVF clinic in Iowa. She owns the company X, Y, and Me and is the author of the storybook series, “Before You Were Born ... Our Wish For A Baby,” ten storybooks for children that help parents explain in age-appropriate, loving language the story of how a child came to be. Each book explains a different form of assisted reproduction. Janice can be reached at 319 738-2080 or on the Web at www.xyandme.com.