The Value of the Genetics Consult for Ovum Donors
Posted in: Resources, 07/30/2014
Standards and Ethics for Egg Donation and Surrogacy (SEEDS) was created by owners of egg donation and surrogacy agencies to define and classify a set of standards that are intended to apply to all such agencies in the United States. SEEDS will not have legislative authority, only advisory status. It is, however, the intention of SEEDS’s founding members to expand the organization in size and outreach to the point that SEEDS’s recommendations will have a major influence and impact on future egg donation and surrogacy legislation.
SEEDS’s goal is to raise the standards by which agencies carry out their work in order to transcend any negative impressions that may have developed from the poor practices of a small number of agencies. Our intention is to reassure potential donors, their families, intended parents and the general public that egg donation and surrogacy can be safe, ethical options for all parties involved to overcome the problem of infertility.
At the meeting, held this July, I gave a presentation about The Value of the Genetics consult for Ovum donors.
I presented data from my practice which was collected from a single agency for a period of 7 years. Among 723 consecutive donors, 213 (29%) had a donor or first degree relative with a condition with a genetic component and 149 (21%) were offered additional genetic testing based on the family history. Ideally, the genetics consult should be part of every ovum donation cycle.
Ellen Speyer presented information about the psychological evaluations of donors and surrogates. it was very interesting to hear exactly how the psych evals are conducted and to learn more about the tools that are used. there are many similar challenges with the genetics evaluation and the psych evaluation, such as how often does the psych evaluation need to be repeated, who owns the information, can the psych evaluation be transferred to another cycle. one thing which struck me is that the psychological exam is very much a required and routine part of ovum donation, but the genetics consult, which is of equal importance, is not yet required.
Marna Gatlin discussed her non-profit organization in which she provides support to over 5,000 intended parents. She was very passionate about her work.
The SEEDS board introduced their mission statement and their goals for the future.
I have long felt that standardization of requirements for genetics consults for ovum donors would help clinics, agencies, and intended parents. i was very hopeful after this conference that in fact this could become a possibility. SEEDS is looking to help intended parents by reducing the variability between agencies and this will inherently reduce liability and create a more coherent offering for agencies.
Additionally, SEEDS supports me in my mission to make the genetics consult for ovum donors a requirement for all ovum donors in the future.
I have written an abstract and submitted for presentation for the 2014 ASRM meeting.
Amy Vance, MS, LCGC
Licensed and Board Certified Genetic Counselor
Bay Area Genetic Counseling