BREAKING: Follow-up, Research, and Informed Consent

by Matthew Eppinette, Director of Programs on May 1, 2017

Reproductive BioMedicine Online

Our Jennifer Lahl along with our colleagues Jennifer Schneider and Wendy Kramer have a very important commentary piece in the journal Reproductive BioMedicine Online.

The title of the piece is “Long-term breast cancer risk following ovarian stimulation in young egg donors: a call for follow-up, research and informed consent,” and it argues that because no one has done or is doing long-term follow-up on egg donors, we simply do not know what the long-term risks are. The article includes five brief stories of egg donors with breast cancer, as well as a summary of breast cancer studies. The full article abstract is below.

They had to move mountains to get this piece published—the kinds of questions they raise are simply not welcome—so after you’ve read it, please share it far and wide. We’re told that it will be available FREE for 50 days, so don’t delay.

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In the USA and other countries, oocyte donation is gaining increasing importance. Although sufficient data exist on procedure-associated short-term risks for oocyte donors, such as ovarian hyperstimulation syndrome, long-term follow-up studies of egg donors are lacking and their health risks are unknown. The lack of information may be misleadingly interpreted as lack of risk. Long-term hormone replacement therapy is recognized as a risk factor for breast cancer; the breast cancer risk of ovarian stimulation for egg donors is unknown but is a possibility. This commentary describes five individual cases of egg donors who developed breast cancer (four out of five women in their 30s) despite negative genetic testing results. Additionally, we summarize available studies of breast cancer in infertile women who experienced IVF. We emphasize the need to create egg donor registries that will facilitate long-term studies on egg donors. Until this information is available, we call for more realistic explanations to egg donors about the lack of knowledge of long-term risks as well as more transparent informed consent documents.

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