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Patient Group to Draw up Guidance on Embryo Donation

A well-known patient advocacy organization has won a federal grant to draw up guidance over the issue of embryo donation. RESOLVE: The National Infertility Association released details of the grant, awarded by the U.S. Department of Health and Human Services (HHS), in early February.

'Best Practices' Guide
Funds from the grant will be used to create a "Best Practices" guide for medical and mental health professionals, social workers, attorneys and others who provide professional services surrounding embryo donation. Information for patients will also be a key focus.

The organization is creating the guide to fill an information gap about embryo donation, explained Joseph Isaacs, RESOLVE's president and CEO, in an interview with Priority Healthcare. "Clear practice guidelines to be applied in what could be a very sensitive transaction need to be developed, and we're honored that HHS asked us to be part of the development of that," he said.

This is the second grant awarded to RESOLVE with this focus. Three years ago, the organization received a major HHS grant to develop and launch the first-ever public awareness campaign on embryo donation. The aim was to educate medical professionals, patients and the general public about the associated medical, legal and emotional issues.

An Option for ART Couples
Embryo donation is included among several options for infertile couples known as Third Party Reproduction. It involves donor eggs that have been fertilized with sperm by the donor's partner or with donor sperm. When a woman undergoing in vitro fertilization (IVF) becomes pregnant and has additional embryos that she no longer needs, embryo donation is one option that she may choose.1

Additionally, there are guidelines on limiting the numbers of embryos to be transferred to avoid the risk of a multiple pregnancy. Thus, excess embryos are often frozen for later use by the couple. Embryo donation then becomes an option if the donor couple conceives or decides not to use their frozen embryos.2

The embryos are later transferred to the recipient's uterus (after being kept frozen for a certain length of time), and the resulting child is not genetically related to either of the recipient parents. Laws concerning embryo donation currently vary from state to state.1

Examples of couples who may benefit from embryo donation are those with severe male and female-factor infertility, single women with diminished ovarian reserve, women who are at risk of transmitting a genetic disease, or couples who cannot afford or wish not to pursue a full IVF cycle.2

Garnering Public Opinion
Integrated into its public awareness campaign, RESOLVE in 2002 initiated the first national survey of adults on the topic focusing on their beliefs, understanding and attitudes about embryo donation.3 On average, 63 percent of the respondents looked favorably on embryo donation as an option for infertility (general public: 48 percent; infertility patients: 65 percent; RESOLVE members: 76 percent).  Harris Interactive conducted the poll.

"Under the first grant, RESOLVE generated groundbreaking data on consumer understanding and perceptions of embryo donation and created educational materials that have been disseminated widely to assist consumers to make informed decisions about this important option," Isaacs explained.

This included the development of continuing medical education materials for health care professionals, and a resource directory of facilities that offer embryo donation to patients, he said.

A Deeper Focus
The "Best Practices" guide that RESOLVE is now charged with developing will more deeply focus on practice guidelines related to the psychological and medical evaluations of donors and recipients, legal and medical issues, and the legal aspects of ART in the context of embryo donation, among other things, Isaacs explained.

The guide will also focus on the differences in state laws about embryo donation, as well, he added.

In 2002, the American Society for Reproductive Medicine (ASRM) published practice guidelines on embryo donation for medical professionals.4 By contrast, the RESOLVE guidelines will be directed toward patients, said Isaacs. "We're trying to identify in developing these practice guidelines what it is that the decision-maker—which ultimately has to be the donor and recipient—needs to understand."

In formulating the guide, RESOLVE says it plans to draw from its continuing medical education material, as well as information it gathers on the ethical, legal and psychological issues. The organization expects to unveil the guidelines this fall, Isaacs said.

For more information, call the RESOLVE helpline at 888-623-0744.

1. American Society for Reproductive Medicine (ASRM). Third Party Reproduction: A Guide for Patients. Available at: http://www.asrm.org/Patients/patientbooklets/thirdparty.pdf. Accessed February 1, 2005.
2. RESOLVE: The National Infertility Association. Medical Aspects of Embryo Donation. Available at:
http://www.resolve.org/main/national/treatment/options
/donor/embryo.jsp?name=treatment&tag=options. Accessed February 1, 2005.
3. RESOLVE: The National Infertility Association. Embryo Donation Research: Select Findings. Available at:
http://www.resolve.org/main/_pdf/EmbryoDonationResearchSelectFindings.pdf. Accessed February 1, 2005. 
4. American Society for Reproductive Medicine (ASRM). 2002 Guidelines for Gamete and Embryo Donation.

John Martin is a long-time health journalist and an editor for Priority Healthcare. His credits include coverage of health news for the website of Fox Television's The Health Network, and articles for the New York Post and other consumer and trade publications.



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