And really what does it mean to regulate? Wikipedia says this about regulation:
“Regulation can be considered as legal restrictions promulgated by government authority. One can consider regulation as actions of conduct imposing sanctions (such as a fine). This action of administrative law, or implementing regulatory law, may be contrasted with statutory or case law.
Regulation mandated by a state attempts to produce outcomes which might not otherwise occur, produce or prevent outcomes in different places to what might otherwise occur, or produce or prevent outcomes in different timescales than would otherwise occur. Common examples of regulation include attempts to control market entries, prices, wages, pollution effects, employment for certain people in certain industries, standards of production for certain goods, the military forces and services. The economics of imposing or removing regulations relating to markets is analyzed in regulatory economics.”
As it stands right now today, in 2008, there is no regulation regarding egg donation. Zero, zip, nada, nothing. The egg-donor industry is not required to keep records of its egg donors.
What does that mean? And I am asking these questions because I truly don’t know.
Does this mean agencies don’t keep records of who applies, who’s accepted into their program, who’s donated, and to whom? I know clinics by law are required to keep records on their patients I think forever. They may go away to storage some place but I don’t think medical records can be destroyed.
(Someone correct me if I am wrong)
There is a doctor in Arizona, Dr. Jennifer Schneider who has gone to Congress to lobby for a National Egg Donor Registry, which I fully support. The concern about a National Egg Donor Registry is that it will potentially dissuade egg donors from donating because it would mean they would be giving personal information to a registry with the understanding they might be contacted down the way from parents or off spring their genetics helped create.
I say make the medical portion of it mandatory, identify egg-donors by number, and if the personal information part of that is a big hairy deal let’s make that part “voluntary” don’t make it mandatory. I think that’s the part that’s making everyone say “ooooh not sure if that’s a great idea, we’ll lose egg donors.” We’ll lose egg donors if we pass a law making compensation illegal. I am not so Pollyannaish to think that egg donors don’t appreciate the money they make donating their eggs. Even my egg donor, who was amazing, was very very honest when she said in her profile:
“I guess it was partially for financial reasons ($2000 can put a nice dent in my student loan debt), but also I want to help others...”
It doesn’t get any more honest than that, and that’s fine with me.
So back to regulation and registries – I don’t think that egg donors are going to run away in fear if they are given the option to volunteer with a national registry in the event the parents of these kids need to look up their egg donor for medical reasons later in life.
Clinics and agencies vary in regards to how much information they collect about the egg donors they recruit. I know of agencies and clinics who like mine collect a 16-18 page egg donor profile on prospective egg donors. This profile covers everything from A to Z. Medical history, social history, educational background, physical characteristics, personal characteristics, reproductive history and what not. There are other clinics and agencies who collect the basics, medical information, eye color, hair color, race, and that’s it. And for the majority of the recipient parents I engage with sometimes the lack of information about their egg donor is extremely frustrating.
I think what the media and general public sometimes don’t understand that those of us who are choosing to create our families through egg donation are not looking for mothers for our children. This registry wouldn’t mean that 18 years later an egg donor is going to receive a knock on her door from the off spring she helped create with a “Hi Mom, nice to meet you.” It would be a way for those kids who are products of egg donation to have access to their medical information, which I think is a basic right. And not to channel Dr. Phil -- but let's get real here. These kids did not sign up to be brought into the world this way, and its the least we can all do to make sure the needs of our children are met.
The other issue revolving around regulation is the compensation part. The American Society of Reproductive Medicine’s Ethics Committee (ASRM) has written a guide regarding egg donor compensation. In this guide it states:
1. Financial compensation of women donating oocytes for infertility therapy or for research is justified on ethical grounds.
2. Compensation should be structured to acknowledge the time, inconvenience, and discomfort associated with screening, ovarian stimulation, and oocyte retrieval. Compensation should not vary according to the planned use of the oocytes, the number or quality of oocytes retrieved the number or outcome of prior donation cycles, or the donor’s ethnic or other personal characteristics.
(I personally think because this is not a law, but a guideline that some agencies skirt around this – if I am reading this correctly compensation should be set at one price and one price only. An egg donor should not be compensated more if she’s a proven donor? An egg donor should not be compensated more if her ethnic background is hard to come by? For instance Asian donors, Jewish Donors, and Middle Eastern Donors, are in high demand – and the amount they are compensated reflects that. Same for those egg donors who are deemed “super stars”.) - Marna
3. Total payments to donors in excess of $5,000 require justification and sums above $10,000 are not appropriate.
(Okay here’s another hot spot for me – I can list several egg donor agencies right now who have signed anagreement with SARTthat theydo and willabide by the ASRM Ethics Committee guidelines governing payments to donors. But guess what folks they don’t. They get around those guidelines by stating that the egg donors fee is only for 10k, however, the egg donor agency is also compensating her for lost wages from her job, or other expenses that go above and beyond regular and customary travel expenses). If an egg donation agency does not agree with or abide by ASRM's guidelines, then don't sign the agreement. I think that's where agencies get themselves into trouble. There is nothing wrong with stating you don't agree with something. The sticky wicket comes from saying you do agree, and then doing the complete opposite.)
4. To discourage inappropriate decisions to donate oocytes, programs should adopt effective information disclosure and counseling processes. Donors independently recruited by prospective oocyte recipients or agencies should undergo the same disclosure and counseling process as donors recruited by the program.
5. Oocyte-sharing programs should formulate and disclose clear policies on the eligibility criteria for participants and on how oocytes will be allocated, especially if a low number of oocytes or oocytes of varying quality are produced.
6. Treating physicians owe the same duties to oocyte donors as to any other patients. Programs should ensure equitable and fair provision of services to donors.
7. Programs should adopt and disclose policies regarding coverage of an oocyte donor’s medical costs should she experience complications from the procedure.
So the big question is – who should regulate the egg donor industry? Should the clinics and agencies regulate themselves, or should the government step in and regulate something they have no knowledge, understanding, or idea about.
Our answer might be in a new group I have had the pleasure of learning about and becoming involved with – this group is called EDSPA. EDSPA is a multidisciplinary organization that promotes cooperation, education and professional ethics in the matters of surrogacy, egg donation, pre-planned adoption and related areas. This group in particular shows great promise I think because they truly want what’s best for the patient. And they recognize the patient not only as the recipient/intended parents who is seeking services but also the egg donor who has so graciously given a very important part of herself so folks like me can become Moms. Regardless it will be interesting to see how EDSPA grows and blossoms in the years to come.
It’s my hope of course that regardless of what solution we in the United States find to resolve the issues we have now in the egg donor industry we are able as a group to come together and work out a fair and equitable solution that can accommodate not only the egg donor and recipient parents, but the medical community as well.