Our Bodies Ourselves
As the demand increases for young women to provide their eggs for both fertility and research purposes, the lack of adequate long term safety data is an issue being raised by all those concerned about this gap in our medical knowledge. The Infertility Family Research Registry (IFRR - www.ifrr-registry.org) offers the opportunity to address this gap and learn much more about the impact of so-called “egg donation” – but only if young women know about this voluntary registry and its potential value.
What does it mean for a young woman’s future fertility or her longer term risk of cancer and other health problems if she provides eggs repeatedly, especially within a short period of time? We simply don’t know enough…and this means that young women still do not have the information they need to make evidence-based choices or give truly informed consent.
In early 2013, three women formed We Are Egg Donors, the first-ever self-help advocacy group created by women who themselves provided eggs (http://weareeggdonors.com/pages/about-us/). Today, these women are conducting in-depth interviews with other egg donors and systematically collecting information about a full-range of their experiences. They are among those now calling for more and better research as well as greater participation in the IFRR: http://www.ourbodiesourblog.org/blog/2013/07/egg-donors-create-support-group-for-women.
Our Bodies Ourselves – best known for its classic text Our Bodies, Ourselves (now in its 9th edition) – is among those women’s health advocacy organizations deeply concerned about the need for better safety data. For more than two decades it has worked with members of the media to bring attention to the need for more research (for example, in this 2009 Time magazine article: http://content.time.com/time/health/article/0,8599,1888459,00.html). It has also joined with the Center for Genetics and Society (www.geneticsandsociety.org) and the Pro-Choice Alliance for Responsible Research (www.prochoicealliance.org) to raise awareness about this and related assisted reproductive technology (ART) issues.
Most recently, growing numbers of medical professionals have expressed similar concerns in journal articles and formal statements about the acute and urgent need for better data. Here are just a few examples:
An October 2013 editorial in JAMA (http://jama.jamanetwork.com/article.aspx?articleid=1756456) noted that “more complete data on both short- and long-term outcomes of donation are needed so donors can make truly informed choices and, once those data are available, mechanisms can be put in place to ensure that the donor recruitment and consent process at clinics is conducted according to the highest ethical standards.”
A new March 2014 statement by the National Perinatal Association (NPA) recommends that: “State regulatory agencies who license and provide oversight for collection and use of human tissues should provide the same level of oversight for sperm banks, the selling of human eggs and egg “donation.” (http://www.nationalperinatal.org/advocacy/pdf/ART.pdf).
A call to action was strongly stated in the NEJM in 2007, and this message still stands: “The most critical issue is the health of the women involved. If women are going to donate eggs, we must ensure that their health is not compromised. We need, therefore, to subject egg donation to far more scientific scrutiny than it currently receives. We need more longitudinal studies of the drugs involved in ovarian hyperstimulation, for example, more long-term follow-up of egg donors, and deeper analyses of the conditions under which dangerous complications occur.” (http://www.nejm.org/doi/full/10.1056/NEJMp078012):
In the coming months, many women’s health advocacy organizations will be reaching out directly to current and potential egg donors to urge their participation in the IFRR. Early responses from graduate students surveyed indicate that many more egg donors would likely sign up with the IFRR if they were only made aware of it as an option. As more egg donors step forward to share their experiences and health outcomes, their amplified voices, along with more medical professionals, might be just what’s needed to promote the IFRR and similar critical research in this field.
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