FAQ’s

Who is offering/sending this survey?

At Donor Conceived Community (DCC), our mission is to make a better world for donor-conceived people. We provide support, education, and resources for donor-conceived people (DCP), parents, donors, and professionals. We want to help both individuals and industries consider the well-being of donor conceived people across the lifespan, and actively look for ways to represent the lived experiences of donor conceived individuals.

Why are we sending this survey?

There has not been much research about donor-conceived people (DCP). Their needs and perspectives have often not been considered in research design or implementation. Through DCC’s work, we know that DCP often express curiosity about their identity, have questions about a variety of common health conditions, and wonder how genetic and environmental factors shaped them. (“What’s nature? What’s nurture? How do they interact?”) We see an opportunity to help advance research with and about donor-conceived people and the understanding of some diseases, while prioritizing the needs, challenges and concerns of our community.

We are sending this survey to learn how many donor-conceived individuals are interested in participating in future research. If there is enough interest, we will create an advisory team made up of donor-conceived individuals, healthcare and mental health providers, public health experts, scientists, parents, and donors. We want the needs and preferences of DCP to be represented in all aspects of the work. The advisory team would establish a research registry - a structured, secure database that collects information from volunteers interested in participating in future research.

Who can complete the survey?

Any person 18+ who was conceived with donor sperm, egg, or embryo.

How do I complete the survey?

Take 2 minutes to answer a few basic questions, and share your email address to indicate your interest in potentially joining future research.

How will this information be used?

We understand that trust and privacy are always a concern, especially for donor-conceived people. Your data will not be shared externally without your explicit permission. We are using MyDataHelps to collect the information because it is a highly secure platform. Your information will remain confidential, and we will use the results to gauge whether building a DCP research registry is feasible. We will provide you with findings from this survey by email.

If a research registry is established, what information would it collect? 

Research registries typically contain basic demographic data, contact information, and relevant health details, all managed under strict privacy protocols. If we move forward with establishing a research registry, volunteer participants would be able to remove themselves from the registry at any time. If established, researchers would submit their research study to the advisory team for review and feedback. An approved study would be permitted to recruit participants through the registry. Eligible members would decide if they want to volunteer for that study. This would save time and resources when it comes to recruiting research volunteers.

How can future research help advance science? 

We can learn about the experiences of donor-conceived individuals and contribute to scientific advancements in areas that impact broader communities, such as mental health, metabolism, reproductive health, and autoimmune disease.

For example, for decades twin and adoption studies have helped advance research on disease and heredity. (It’s important to acknowledge that the health and well-being of people were not prioritized in some prior research, which will not be the case here.) In our community, there are many donor-sibling groups where people are genetically related as half-siblings. One possible example might be research on groups of half-siblings who share a genetic connection but often grow up in different homes, which could give scientists an opportunity to learn about how genes (nature) and environment (nurture) work together to shape who we are or cause certain conditions. Researchers might also be able to spot small differences in genes that affect health or traits, or notice patterns they might miss if they only looked at a few people.

Why should I participate?

Of course, participating in future research is totally up to you! Completing this form just helps us understand the interest level. Future research participants may be able to contribute to scientific advancements in a variety of areas, including gathering information about the experiences of donor conceived people, and topics that interest or affect them. As a participant, you might feel empowered by using your circumstances to help professionals, parents, or the public better understand topics, which may help inform future decisions, policies, or industry practices. Or, you might prefer not to participate in certain studies, or share information about your health and personal information. Either way, we support and respect your decision.

Whether or not you join future research, you are welcome to check out the tools on MyDataHelps platform like the health trackers, and a secure place to access your electronic medical records. They are free for your personal use. Learn more here.

Questions?: Please don't hesitate to reach out to us at research@dccsupport.org.