The Donor Sibling Registry (DSR) is a non-profit worldwide organization dedicated to educating, connecting and supporting those affected by gamete donation, including donors, recipients and offspring. At 25 000 members, the DSR has connected 7000 genetic first degree relatives; hundreds of donors enjoy contact with offspring and thousands of half-siblings interact together.
The DSR doesnt just generate genetically related joy, it also shines light on serious genetic concerns about gamete donation. Frequently the DSR counsels recipients whose children have inherited undisclosed genetic disorders, or whove discovered their donor was dishonest regarding health, or that the sperm bank didnt notify them about reported illness or amended the medical profile.
The number and severity of these health matters is discomfiting. Since donors can father many offspring (one DSR donor has more than 120 known offspring) donors can transmit disease to scores of children.
Currently, many sperm banks either refuse to update donor/offspring medical information, or even if they accept updates refuse to share the information, or make the process of reporting so complex or expensive that donors and recipients simply cannot comply or afford it.
Most sperm banks dont carry out basic genetic screening techniques such as karyotyping.
Recipients clearly need to be warned about hereditary disorders to prevent unnecessarily sick children being born. To protect donors, recipients and offspring the DSR is calling for the implementation of strict regulation, mandatory genetic testing and the establishment of a central gamete donor registry run by an independent authority.
Prague, Czech Republic
24 - 28 Apr 2010
European Society of Endocrinology