Tracking Change

Tracking Change: The Feasibility of a Voluntary Gamete Donor Registry in the United States

When: March 28, 2008 (9:00 a.m. - 5:00 p.m.)
Where: University Club, Michigan Room
76 East Monroe Street
Chicago, Illinois 60603

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Concerns regarding secrecy in the use of donor gametes have led to recent regulatory responses in a number of European nations and Australia. The United States, however, greatly concerned with potential infringement on reproductive rights and autonomy of participants, continues to lag behind in formulating a uniform national response. Instead, piecemeal solutions have been implemented by individual sperm banks, consumer groups and for-profit entities that seek to keep gamete recipients updated on significant health conditions of the donor or to match donor offspring with other genetically related donor offspring. These lay registries have emerged without public discourse, public accountability, multidisciplinary expertise, uniformity or oversight. As legislative proposals begin to emerge in the United States, the time is ripe for professionals most directly impacted by the creation of such registries to take the lead in the discussion and develop a feasible, acceptable and effective solution to benefit the full range of stakeholders.

Developing a single effective registry requires balancing the interests of the child, donor, intended parents, health care professionals and society. In addition, conducting a risk/benefit analysis is necessary to protect, promote and enhance this important reproductive option and ensure the physical and emotional safety and privacy of all participants, including the resultant offspring.

Proposed benefits of creating a voluntary gamete donor registry centralized within the reproductive medicine community include:

• Collecting and maintaining pertinent medical, health and genetic information
• Helping avoid identity issues or familial disconnect experienced by some children
• Preventing inadvertent consanguinity and enabling offspring to make informed reproductive decisions
• Enabling Assisted Reproductive Technology programs to share donor information with one another
• Ensuring that donors do not participate in multiple programs or more times than is medically and/or psychologically recommended
• Facilitating outcomes/epidemiological research that is currently lacking despite the thousands of births annually utilizing donated gametes in the United States

Tracking Change will explore the feasibility of creating a uniform voluntary gamete donor registry in the United States. Using a multidisciplinary approach, expert panelists will discuss the practical, theoretical, and ethical benefits and barriers of developing and implementing a registry with a particular focus on legal and policy considerations. The issues will be discussed from the perspectives of a range of stakeholders, including physicians, fertility centers, sperm banks, donor gamete recipients, donors, donor gamete offspring and society.