Beyond the Donor Profile: The Importance of Obtaining Updated Medical Information on Gamete Donors

During the donor screening process, typically the donor’s history and three generations of immediate family members medical history is reviewed before qualifying a donor. But this is only a point in time and based on self-reported history. While genetic carrier screening tests are also normally performed, these must be interpreted alongside accurate familial medical history. Obviously, a donor and their family’s medical conditions evolves as they age, and doesn’t a donor conceived individual deserve access to this ongoing information?

Collectively, the speakers believe donor conceived individuals are entitled to and must have access to ongoing medical information regarding their donor origins to ensure their own well-being. But who has accountability to handle that reporting? Today no mechanized method exists to update and report on donor family medical evolution and it’s a problem we will only continue to face until we solve it.

Additional information:

1. Top takeaways for the audience:
• Donor conceived children deserve and want transparency with their donors.
• Goals for the third-party reproductive health community must go beyond a healthy pregnancy and birth, but also the medical welfare of the future child.
• The healthcare community has an obligation to provide ongoing gamete data to donor conceived individuals.
• The healthcare community is accountable for collectively upholding this standard and producing a solution all can abide by.
2. Other resource citing:
   • Tandem Genetics – https://tandemgenetics.com/
   • Donor Conceived Community – https://donorconceivedcommunity.org/
   • Everie Donation – https://www.everiedonation.com/

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