Ensuring Your Donor-Conceived Child's Access to Information: Planning for the Unexpected
Parents of donor-conceived children under the age of 18 have a responsibility to ensure our kids have access to important information about their genetic connections and inherited health history. But what happens if we're unable to provide that information due to incapacitation or death?
Here are seven actions you can take to support your child's access to donor information and genetic family, even in worst-case scenarios.
1. Document Everything - Compile all relevant information about your donor 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 and location 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 a Trusted Information Guardian - Choose a trusted person to be your child's information guardian. This might be in addition to your appointed legal guardian. Discuss your wishes with this person in detail, including when and how you'd like the information shared with your child if you cannot do it yourself. This person 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
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 storage fees)
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 what you need to do to ensure your Information Guardian can access and 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. Educate Your People - Make sure the people close to you understand your child's conception story and the importance of maintaining access to donor information. This can help prevent misunderstandings or withholding of information in the future.
7. 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.