Ensuring Your Donor-Conceived Child's Access to Information: Planning for the Unexpected

In the six years that I've been connected to the parents of my kids’ same-donor siblings (“podparents” as I lovingly refer to them), several families have experienced life-altering experiences: death, brain injury, divorce, incarceration. I've seen firsthand what happens when people aren't on the same page about disclosure or when carefully crafted plans go awry. These experiences drove home the importance of thinking about what happens if I'm not around to support my kids in this part of their identity journey. While none of us wants to imagine not being there for our children, creating contingency plans is one of the most loving actions we can take. This realization prompted me to write this post - not to frighten anyone, but to encourage thoughtful preparation that honors our children's needs for information, connection, understanding, and autonomy.

As a person who has chosen donor conception, you've already made many thoughtful decisions on your path to parenthood. Among these is embracing the lifelong commitment to helping your child understand and integrate their conception story into their developing identity, gain access to donor information, and navigate connections with genetic relatives. You are your child’s initial decision-maker, then transition to a supportive guide, and ultimately become the listening ear as your child takes full autonomy in exploring their origins, forming their own feelings, and determining how they wish to connect with their genetic heritage.

If you die or become incapacitated while your child is still a minor without designating someone to continue the conversation, their understanding of their donor conception story may become frozen at that point in time. Young children who were just beginning to learn about their origins may never receive the elaboration they would need as they mature. Teenagers who were in the midst of processing their identity may be left with unresolved questions during a critical developmental stage. Without your thoughtful planning, your child may be left with an incomplete narrative during an already painful time of grief and transition.

Life can be unpredictable, and while difficult to contemplate, having a plan for how this aspect of your child's journey will continue to unfold if you're not able to be there yourself is an act of deep love and responsibility. By preparing a plan to carry forward these important supports, you're maintaining your commitment to your child's need for information, understanding, connection, and autonomy throughout their life journey.

Preparing for the Unthinkable: Why Planning Can't Wait

When donor-conceived people don't know about their donor conception, don't have access to information about their origins, or don't have the opportunity to choose to connect with genetic relatives, they may experience any of the following consequences.

• Missing context for self-understanding: People naturally look for similarities with family members to understand themselves better. Without knowledge of and information about their genetic connections, they may struggle to understand certain aspects of who they are and why they differ from their raising family.

• Incomplete medical history: Without knowledge of their donor conception and access to health information from the donor, your child may miss important insights about potential hereditary conditions or predispositions that could benefit from early awareness.

• Lost opportunity for connections: Many donor-conceived people express a desire to know about and potentially form relationships with half-siblings or the donor. Without knowledge of their conception and information about how to locate these relatives, these potentially meaningful connections remain impossible.

• Eroded foundation of trust: Research suggests that discovering donor conception accidentally or later in life can sometimes lead to feelings of betrayal and mistrust. Similarly, discovering that the information they do have about the donor is incomplete, outdated, or incorrect can be deeply unsettling. Knowing about one's conception from an early age and having people who support access to information and choice in connection fosters trust and security.

• Limitations on personal autonomy: Having knowledge about one's origins, access to complete information, and the freedom to choose whether to pursue genetic connections allows donor-conceived people to exercise autonomy in a fundamental aspect of their identity. Without these elements, your child's ability to make informed choices about their identity may be limited.

• Red tape and institutional barriers: As gamete banks and fertility clinics close or change record-keeping systems, vital information about the donor can become permanently inaccessible without proper documentation that you maintain yourself. Your child may face significant legal hurdles accessing information about their genetic origins without your advocacy and preparation.

The Inheritance of Identity: Planning for Your Child's Donor Information

Here are eight actions you can take to support your child's identity formation, access to donor information, and choice to connect with genetic family, even in worst-case scenarios.

1. Document Everything - Compile all relevant information about your donor(s) and conception journey. Store this information securely, both physically and digitally. Consider using a password-protected file or a safety deposit box. Information can include:

• Donor ID number(s)

• Name, location, and contact information of any fertility clinic, gamete bank, or matching agency involved

• Usernames and passwords for any clinic/bank/agency accounts

• Copies of contracts or agreements related to the donor gametes or embryos (including storage of remaining specimens)

• Health history or health updates received about the donor(s)

• Identity of the donor(s) or closest genetic relative, if known

• Information about the donor(s) (e.g., profile, photos, genetic screening results, personality tests, essays, interviews)

• Information about known genetic siblings

• Information about how to reach the genetic siblings or their parents if they are minors, including usernames and passwords for registries or contact information for at least two families

• Usernames and passwords for any direct-to-consumer DNA testing services with your child’s DNA

• Information about disposition preferences for stored embryos and/or gametes

• Personal letters to your child, your child’s guardian(s), and anyone else you deem important

2. Designate Trusted Information Guardians - Choose at least two trusted people to be your child's information guardians. This might be in addition to your appointed legal guardian. Discuss your wishes with these people in detail, including when and how you'd like support to be provided to your child if you cannot do it yourself.  These people should:

• Know where to find and how to access all documented information about your child’s conception and genetic connections

• Understand the importance of providing this information to your child

• Be willing and able to share the information with your child and engage in discussions about their origins with your child on an ongoing basis

• Be aware of the donor disclosure status (anonymous, OpenID, etc) and how to assist your child in requesting information when they become eligible

• Be identifiable by members of your same-donor sibling cohort, if you are connected

3. Include Guidance in Your Will - Work with a lawyer to make sure your will includes everything needed to ensure your child's access to donor information and genetic family and to execute your preferences for embryo and gamete disposition. This might include:

• Name and contact information of the information guardian

• Instructions for accessing your important information packet

• Descriptions of when and how information should be shared

• Allocated funds for potential future costs (e.g., travel to meet genetic relatives, DNA testing, counseling, embryo/gamete storage fees, educational resources)

• Stated embryo/gamete disposition preferences and instructions for how to update the clinic/bank/agency

4. Keep Contact Information Current - Regularly update your contact information with the clinic, bank, or agency. Contact your clinic/bank/agency to find out how you can ensure someone can receive information if something happens to you.

5. Review Disposition Plans – If you have stored embryos and/or gametes at a clinic/bank/agency, review the agreements you signed closely. Make sure you know what happens upon your death and confirm that your choice on record is still what you want.

6. Report Your Child’s Birth - Gamete banks typically require verification that a child was born from their donor before releasing identifying information when the child becomes eligible. Without this birth reporting, your child may face significant barriers to accessing information or making connections later. Contact your clinic or bank to confirm your child's birth has been properly documented in their records, and keep proof of this reporting in your information package.

7. Broaden the Circle - Beyond just designating information guardians, consider creating a wider network of understanding by educating key people in your child's life about donor conception. This could include extended family members, close family friends, school counselors, coaches, or teachers with whom your child has long-term relationships, medical and mental health providers, or religious and community leaders who provide guidance to your family. If you die or become incapacitated while your child is still developing their understanding of donor conception, they'll need trusted adults who can answer questions, validate feelings, and support their identity exploration. Without these prepared individuals, your child may face isolation in their donor conception experience or receive misinformation or dismissive responses that compound their grief and identity questions.

8. Tell Your Kids - If you haven’t told your children they are donor-conceived, it’s time. Research overwhelmingly indicates that donor-conceived people prefer to be told early and by the parent(s) who raised them. This information should come from you first. Remember, you don’t have to wait until your child is 18 to give them access to the donor information packet.

A disclaimer and final thought

I hope this post is a useful resource that inspires reflection, meaningful discussion, and proactive planning among families formed through donor conception. This post is not exhaustive and does not constitute legal advice. Legal requirements, procedures, and protections regarding donor conception, parental rights, information access, and estate planning vary significantly by country, state, province, and local jurisdiction. What may be legally valid in one location may be insufficient or even contrary to law in another.

I encourage you to:

• Use this document as a starting point for family discussions and planning

• Reflect on how these considerations apply to your unique family situation

• Consult with professionals in your area who understand local laws and regulations

• Connect with support groups and community resources for donor-conceived families

• Regularly revisit your plans as your circumstances change

Keep in mind that if you haven't legally designated someone who has both the authority and understanding to make decisions about your child's access to donor information and potential genetic connections, these decisions may fall to people who don't comprehend their importance. Court-appointed guardians, well-meaning but uninformed relatives, or the legal system may make choices based on outdated views or misconceptions about donor conception. Your child's ability to access information or connect with genetic relatives could be delayed until adulthood or prevented entirely, removing their agency during formative years when understanding their identity is most crucial.

Every family has different circumstances, values, and approaches to parenting. Donor conception is just one part of your child's and family's identity—an important part, but not the only factor that shapes who they are and the decisions you make. While the considerations outlined here are important, they should be understood within the context of your unique family situation. Your cultural background, religious beliefs, family structure, and personal values will all influence your end-of-life planning and the legacy you leave for your child. Perhaps the most meaningful inheritance you can provide isn't financial or material, but the gift of knowledge, identity, and connections that will continue to support your child long after you're gone.