Transparency in donor conception

Frequently asked questions

How does DCPData work?

You enter your name and email, information about the donor(s), then minimal information of the donor-conceived person you represent - name, birth month and year, birth country/state, and assigned sex at birth. DCPData places you into a sibling pod with other genetic siblings (and their families if you're a Recipient Parent with young children). Each pod has up-to-date health information posted by participating siblings and donors, a forum for communicating and posting pictures to the group, a list of siblings with their own profiles, unlimited direct messaging, and more, all without needing to share more than your first name and last initial with the others in your pod. When you join DCPData you can also opt in to receive surveys - your answers to which help advance donor-conceived rights.

Who is my information shared with?

Information you upload is never shared with anyone outside of your sibling pod, which means if you're a donor-conceived person only your donor-conceived siblings on the platform will see the information. If you're a recipient parent, other recipient parents who chose the same donor will be the only ones who can see what you post. All data except for first name and last initial is optional to share, which means we don't share anything with your sibling pod without your consent. Your optional answers to optional surveys (never your identifying information) will be shared with advocacy groups for the sole purpose of advancing donor-conceived rights, should you choose to complete the surveys (did we mention these surveys are optional?).

What identifying information does my sibling pod see?

You are only required to share your first name and last initial with your sibling pod - we believe anonymity is never the best practice in donor conception - but you can optionally share your birth country, birth state/province, birth year, and your assigned sex at birth, as well as your pronouns and whatever additional information - things like your socials or a few fun facts about yourself - on your profile for other pod members to see, should you choose to share this information. Participating donors cannot see any of your information at all.

What if I don't know anything about the donor?

You can still sign up! When you do, you can opt in to be added to our Genetic Detective Queue. Our genetic detectives will help those in the queue find their genetic parent or donor on a first come first serve basis. You will need to be on or be willing to join Ancestry.com in order to benefit from this service, as Ancestry.com is the main tool of our partnered genealogists, DNAngels

What if there are no other donor siblings on DCPData yet?

You will be the first member of your DCPData sibling pod and will become one of your pod admins. You can opt in to be notified by email when a new donor sibling joins - new members are joining everyday - and in the meantime, you can fill out surveys that help show policymakers donor-conceived people and their families want, need, and demand more genetic information.

Who will see my health information?

All health information that is posted by genetic siblings or their family is only visible to those in their sibling pod on the DCPData dashboard. Participating donors can never see any information at all besides their own.

What are some of the ways my data is protected?

Your data is protected by state-of-the-art cyber security built in 2024, including industry standards like email verification, optional two-factor authenticaion, and data encryption. Within this secure, GDPR- and CCPA-compliant protection, each sibling pod has their own administrators who control whether a new sibling is able to view and post user data. Not even your profile pictures can be seen by new sibling pod members until your pod admin approves the new members. To ensure further safety, minimal information is needed to join DCPData and even less is shown to your sibling pod - only first names and last initials are ever displayed on the DCPData platform, never full names, and DCPData never asks for physical addresses or full birthdates, so all of your identifying information is safe unless you choose to share it via direct messaging, the sibling pod forum, or on your profile page. The DCPData team has gone to extreme lengths to prioritize the protection of your data and identity, and it shows from the very first screen after signup.

I'm donor-conceived. Will my parent(s) be able to post on the forum of my sibling pod and see the information me and my donor-conceived siblings post?

As of now, if recipient parents and their donor-conceived children join the platform, the parents and children will have separate forums and health information that the other cannot see - one for parents and one for donor-conceived people. As the community grows we may give pods the option to merge if that's something our users request. We intend for donor-conceived children to have the option to take over administration of each account when they turn 18.

How is this different than commercial DNA testing sites?

On the DCPData platform, users provide health information to fill in the gaps for your sibling pod. Instead of just seeing likelihoods of certain health issues like on commercial DNA testing sites, you see how many people in your sibling pod report certain health issues - whether active medical diagnoses from a medical doctor, dormant genetic predispositions discovered on a separate genetic testing service, mental health diagnoses, or general health information - so you can see the numbers of how your sibling pod's health really is and can take the relevant information to your doctor. For each piece of health information reported by your sibling pod, you can confirm whether or not you also have it, share age of onset if it's a medical diagnosis, and even comment on the medical information so there's a dialog around each.

Do I have to message donor siblings on this platform (only)?

No! We encourage you to connect (or not connect) in whatever way works for you. We think - or rather, we know, because we built this platform with Donor-Conceived People and Recipient Parents at every step of the way - that you'll benefit from our easy-to-use dashboard where you can see health information and more. If you choose to connect with your donor siblings via email or another form of communication we fully support your doing whatever serves your mental and physical health!

What if I need mental health support?

If at any point you're feeling overwhelmed you can click the "I need emotional support" button at the bottom of the DCPData menu and see a list of mental health resources, including mental health professionals, support groups, crisis hotlines, and more, many specializing in helping donor-conceived people and their families. See our list of educational resources, too, and reach out to us if we should add more to these lists!

What makes you different than other platforms that serve the donor-conceived community?

DCPData is for everyone - its pricing is super affordable, you don't need to know anything about the donor to benefit from our services, and our platform is designed to get the most people on it so Donor-Conceived People and Recipient Parents get the most value. This is a living, breathing solution with new features added regularly based on what you tell us you need, and is an all-in-one solution to keep ongoing tabs on your genetic family as it grows. We believe donor-conceived people and their parents should have the benefits of transparency and accurate, up-to-date medical and other important information *from birth*, so this tool can be used by parents with young children, too!

Is DCPData only for those in the US?

No! Anybody can use it and benefit from DCPData. If your country has its own registry, we encourage you to leverage every resource you have, but from those registries you are likely only getting the genetic information collected in your country, and this information is not generally updated throughout the life of the donor-conceived person(s). DCPData can offer a more robust picture of how your donor-conceived genetics are manifesting in the real world, and can be particularly valuable to those in countries who import gametes from the US. These individuals have not historically had access to their American donor siblings' health (or any type of) information. Even getting the *donor's* health information is just one piece of data, and it is often from a single point in time when the donor was young and healthy, and can too often be full of inaccuracies. What if you could access many more datapoints from today and beyond? What if it was easy and affordable to do so?