With the increase in people using commercial DNA testing kits, such as AncestryDNA, FamilyTree, MyHeritage, or 23andMe, the ability to be linked with genetic relatives potentially impacts the fact that many donations of genetic material, such as egg donation, sperm donation, and embryo donation, may no longer be anonymous as originally intended.
With the advancement of commercial DNA testing kits, parties are able to be linked with genetic siblings/offspring/parents with reports of people discovering that their mother or father are not in fact their biological parents as they may have initially thought. Further, people are finding genetically related half siblings through these tests as a result of multiple donations of genetic material from a donor.
When parties enter into a genetic donation agreement, such as an egg donation contract, the expectation of the type of communication and identification of the parties is set out in the contract. If the arrangement is an anonymous egg donation agreement, the parties will be identified by a donor number without identifying information shared.
In the confidentiality and future contact sections of the contract, any permitted future contact between the parties also needs to be established. For example, parties may agree to only permit future contact between the parties for medical information only whereby such future contact is only to be facilitated through a third party like the fertility clinic or matching agency. The contract may set out that the parties are not to contact one another directly or attempt to contact one another directly. In contrast, some egg donation contracts allow for future contact between the parties directly and the identity of the parties may be shared, either by full name or partial names.
Egg donation contracts sometimes reference language specifically relating to the commercial DNA testing kits so the intent is clear between the parties that the arrangement is to remain anonymous. If the parties in the future elect to perform a commercial DNA test, then a contract may prohibit the testing party from making the results of the testing public and it may prohibit the testing party from requesting that the genetic testing company match the tester with potential genetic relatives to avoid breaking the anonymous nature of the egg donation contract.
A resource some intended parents and donor utilize in order to maintain contact between one another, which can provide for the option of maintaining the anonymous nature of the arrangement is through the voluntary database called the Donor Sibling Registry. The parties use of the DSR may be specifically set out in the egg donation contract where typically the intended parents agree to pay for any registration costs for the donor to join the registry.
The Donor Sibling Registry(DSR) is a website and nonprofit organization in the United States that provides a community to allow donor-conceived people the opportunity to locate medical and health information from their biological donors, allow donors to share family, ancestral, and genetic details with offspring, and allow for half-siblings to connect, among other resources relating to donation. When visiting the DSR, those looking to find a biological donor or half-sibling can search the database by the donor’s birthday, donor type, donor ID number, or facility the donation occurred.
It is important for the intended parents, and separately the egg donor and spouse, if any, to be represented by separate lawyers so they can best understand the rights and obligations of the parties in their egg donation contract, specifically as it relates to the known or anonymous nature of the agreement and the commitment the parties are making as to the future contact between the parties and confidentiality.