A Guide for Egg and Sperm Recipients: Whether to Disclose Biological Origins?

February 17, 2011

in All Things Fertility,Egg and Sperm Donation,Guest Bloggers

This is a guest post from Mindy Berkson from Lotus Blossom Consulting. Mindy Berkson has over a decade of experience in the infertility field. In addition to her personal battle with secondary infertility, Mindy has worked in several different capacities at both physicians’ offices and egg donor and surrogacy agencies. Mindy received her B.S. in Economics from the University of Michigan, Ann Arbor. As an IVF coordinator, Mindy guided hundreds of intended parents through the stressful demands of the infertility process as well as provide professional and compassionate assistance in dealing with the emotional barriers involved with third party reproduction. Her research and in vitro fertilization experience in the field enables her to truly be a resource and provide an insider’s approach. With a deep commitment to helping others, and a passion and knowledge of the fertility process, Mindy founded Lotus Blossom Consulting.

Disclosing the Perfect Stranger: A Guide for Egg and Sperm Recipients

One decision that is often overlooked in donor facilitated arrangements is the determination to disclose to future offspring their genetic origins. In the past this was always done anonymously and the secrecy continued over the course of a lifetime. However, recent studies on sharing genetic origins with offspring have proved that disclosure of genetic origin at a young age is healthy in maintaining a strong relationship and bond for all involved parties.

The three main factors that play into disclosure are does the child have an inherent right or need to know biological origins, and what is in their best interests? How disclosure impacts the recipient parents? And finally, when to disclose the information to offspring?

The best interests of child can be argued from both sides. A growing number of mental health professionals agree that a child has a fundamental right to know his biological origins. No one can predict if this medical information may be necessary in the event of a medical emergency or how access to this information may help an individual when he/she is ready to start their own family. It can be argued that this information is fundamental to an individual’s sense of self and personal identity. These values need to be analyzed on an individual basis consistent with thoughts and beliefs of that particular family unit. Maintaining secrecy can be difficult, especially family secrets. If discovered, by accident, the risks of impacting the relationships and family bonds could be jeopardized.

In a study performed by Lycett et al., (2004) the impact of disclosure was analyzed on families willing to share this information with their offspring. Out of 46 donor created offspring, 60% of the families had elected not to disclose genetic origins and the remaining 40% planned to disclose the child’s origins once the child reached adolescence. What was most interesting about this study is that between the two groups there were no differences between the disclosing and non-disclosing fathers. It was the non-disclosing mothers who reported a strain with keeping the secret. Thus, indicating that non disclosure impacts mothers more intensely than it impacts fathers. Many mothers fear the reaction from the child, and are concerned about placing a strain on the parent child bond. The study highlighted that these parental attitudes may in fact impact the parent-child bond as the children get older.

In contrast, a study performed by Van Berkel et al., (2007) in the Netherlands, where non- anonymous donation is standard and the only option available, investigated secrecy in open donation arrangements. Of the participants, the vast majority felt that origins of conception had no influence on their relationship with the child. The mothers did, however, show a greater level of concern about the disclosure plans and how the children would react to the information. Thus emphasizing the fear factor expressed by mothers is in the previous study. However when comparing being required to use open donation vs. anonymous donation, all mothers agreed that the genetic origin did not impact their familial relationships and or bonds with their children.

The vast majority of the cases studied in the Netherlands, showed the children regarded the donor as an aunt or special family friend.

Disclosure is not something that occurs one time. Disclosure is a story that evolves over time and through a series of opportunities for parents to come to terms with their decision and to share with offspring the need to use donor gametes as well as the emotional decision that led them to this path. Disclosure involves the need to share that the importance of family and the need to become a family unit. The decision to disclose genetic origin greatly varies from family to family and is often impacted by the specific family unit, their structure and makeup, their religious, social and cultural values.

Finding the perfect stranger is hard work physically, emotionally and often spiritually. But in addition to identifying the perfect candidate, making the decision to disclose the biological connection involves a host of various feelings, emotions and considerations that may influence the type of donor you choose. When considering using a donor, it is important to consider how and if you plan to disclose to your offspring. The type of donor you choose may affect if, but also how and when you choose to disclose to your child their origin of conception since the donor you choose may play into the roles and relationships among parents, children and extended family.

Finally, it is essential to know when to make the decision to disclose genetic origins to offspring. Although there is no one right answer, recent data shows that sharing genetic origins with children at a young age is much preferred to divulging the information in adolescence. A recent study performed by Cambridge University researchers has found that disclosure of donor paternity at an early age lowers the likelihood of negative reactions from the offspring. The study findings published in the recent issue of Human Reproduction provides different perspectives regarding the response of the offspring depending on the age at which their biological origin is disclosed. Traditionally, donor conception has been treated with secrecy. A recent increasing trend towards openness of genetic origin has showed positive impact on children of all ages. In fact, most mental health professionals specializing in collaborative reproduction, encourage parental openness to reveal genetic origins to children as young as three years old. This trend can further be evidenced by the growing number of children books written about donor conception and geared for children between the ages of three and eight years of age.

Vasanti Jadva, from the Faculty of Social and Political Sciences, Centre for Family Research, University of Cambridge, UK, and colleagues, conducted a study which evaluated the difference in responses of children and adults, when informed about their genetic origin. The scientists analyzed the data obtained from anonymously completed online questionnaires by 165 members aged between 13 and 61 years, of the Donor Sibling Registry (a worldwide registry for donors). The study results showed that, compared to offspring of heterosexual couples, children born to lesbian couples and single mothers received information about their donor conception at an earlier age. It was also noted that the mean age of disclosure was 14 years, with 19% of the offspring knowing about their paternity after the age of 18 years and 30% before three years of
age. The study also showed that 38% of the offspring did not recall the exact age of disclosure since they were too young to remember.

Yet another study on donor conception conducted by Golombok et al. (1995), showed no adverse effects on child development or on familial relationships were evidenced when children were made aware of genetic origins at a young age. Yet, a higher incidence of negative feelings was reported among individuals who received information about their origin in adulthood compared to those who were informed about their genetic origin during childhood or adolescence.

In my years of experience working with hundreds of intended parent(s) who have conceived through donor gamete, I have found that many want to share openly with their children, but just don’t know where to begin. Disclosure can be uncomfortable primarily because it was not the pathway to parenthood of choice. I encourage my clients to focus on how fortunate they are to have access to advanced technologies and fertility treatments as well as a special donor who so generously and willingly gave of his/herself to share the essential piece necessary to conceive. This small shift in conjunction with a decisive disclosure plan and the knowledge that the psychological well being of the child and the family bond will not be severed, has enabled so many of my clients to come to the realization, “I am so fortunate today, to have my most wanted child, and so fortunate back then, to have the perfect stranger.”

Mindy Berkson’s, advocacy work affords clients an insider’s approach to navigating through the infertility process. Mindy utilizes nationwide resources to develop individualized and comprehensive plans, including relevant insurance and financing information, to help clients make informed decisions. For more information about Lotus Blossom Consulting, LLC, call toll free (877) 881-2685, email Consultant@LotusBlossomConsulting.com or visit them on the web at www.LotusBlossomConsulting.com and www.TheInfertilityConsultant.com.

References 1. Golombok, S., Cook, R., Bish, A. and Murray, C. (1995) Families created by the new reproductive technologies: quality of parenting and social and emotional development of the children. Child Dev., 66, 285-298. 2. Greenfield, D., The impact of disclosure on donor gamete participants: donors, intended parents and offspring. Current opinion in Obstetrics and Gynecology 2008, 20:265-268. 3. Jadva V, Freeman T, Kramer W. The experiences of adolescents and adults conceived by sperm donation: comparisons by age of disclosure and family type. Hum Reprod. 2009; doi:10.1093/humrep/ dep110. 4. Lycett E, Daniels K, Curson R, Golombok S. Offspring created as a result of donor insemination: a study of family relationships, child adjustment, and disclosure. Fertil Steril. 2004 Jul;82(1):172-9. 5. MacCallum F, Golombok S. Embryo donation families: mothers’ decisions regarding disclosure of donor conception. Hum Reprod. 2007 Nov;22(11):2888-95. 6. Van Berkel D.,Candido A.,Pijffers WH. Becoming a mother by nonanonymous egg donation: secrecy and the relationship between egg recipient, egg donor, and egg donation child, J. Psychosom Obstel Gynecol 2007; 28:97-104.

{ 1 comment… read it below or add one }

marilynn September 22, 2013 at 11:52 am

I help reunite separated families for free and I get more and more requests from families that have been separated by parents who were gamete donors and agreed to abandon parental responsibilities for their children born as a result of reproductive services they performed under contract.

It is very difficult for people to locate their estranged parents or children or siblings under these circumstances and when located they are not even legally considered kin because they are not the offspring of people named parents on their birth records. It is very difficult all the way around for all the donors relatives to get information about one another due to the falsely recorded birth certificates.

Joining websites like the DSR that helps find your relatives based on donor numbers or FTDNA that helps find your relatives based on DNA samples you submit can be very helpful to people who suspect they might be the offspring of a donor. It’s getting very inexpensive to join under $100 for a list with hundreds of named relatives on it all looking to connect as family. Donors and their offspring join hoping to connect as family and undo what was done by the terms of the reproductive service contracts.

People wondering if they are donor offspring can look for risk factors like:

their legal mother was over 35 when they were born and was married to the man named as father on their birth record for a few years prior to their birth and they owned a home and a car and decent furniture and had good jobs when they were born. Or their legal mother was over 35 and single and no man is named father on their birth record. If their legal mother was 39 or more at the time of their birth or if they have a fraternal twin or if their legal mother gave birth again over 40 they should join these websites and its going to become a matter of course for people with older parents to just join knowing that it is very rare for women to naturally conceive when they enter their 40′s. Certainly anyone told that their legal mother had IVF with her own eggs should not trust that statement and will join to check their DNA on general principal to find their relatives. They should not have to go through these hoops though this is all terribly unfair. People should just be accountable as parents for their own offspring end of story.

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