On October 5, 2008, as part of the Infertility Network's 2008 Donor Conception conference which focused on Ethics, several of the attending organizations came together to form "The International Network of Donor Conception Organizations". I attended this year's conference but had to leave before the second day which was to entail how to breainstorm and push forward items of shared interest. Apparently this organization was the result of that meeting.
The founding organizations include The Donor Sibling Registry, USA, The Donor Conception Network, UK, CaBRI, USA, Association MAIA, France.
I have hoped to see such an organiation since I attended the same conference in 2005 after which I floated an idea to start a Donor Conception Alliance and even went as far as creating a steering comittee trying to pull together individuals from differing backgrounds which never left that committee. Although I had no role in INODCO's creation I expect to be a firm supporter of it.
While a blog is obviously not an organization perhaps they will create a blog roll of supporting blogs? The image in the left side bar is not authorized by anyone and was created by me to show my support for the organization and the objectives listed below.
All involved organizations support the following objectives:
1. End donor anonymity.
2. Track all recipients, donors and births and safeguard all records in a central, government data bank indefinitely. Information to be accessible by all involved families.
3. Mandate reporting of donor conceived live births from each donor.
4. Limit the number of births conceived with the sperm or eggs from any given donor
5. Require donors to regularly update their family medical history. Medical information to be included in donor data bank.
6. Mandate genetic testing for donors and include genetic information in donor bank.
7. Push our respective governments to inquire into followup health histories of egg donors.
8. Require mandatory third party counseling for all prospective donors and parents.
9. Require legal and financial protection for anonymous donors so that they may feel safe to come forward.
7. Push our respective governments to inquire into followup health histories of egg donors.
8. Require mandatory third party counseling for all prospective donors and parents.
9. Require legal and financial protection for anonymous donors so that they may feel safe to come forward.
4 comments:
The amount of data people want stored on donors seems dauntingly large and unreasonable. I'm sure most prospective donors aren't looking forward to having an ongoing obligation regarding their sperm. They only get paid when they donate, so there's really no incentive for them to update medical history and mandated genetic testing would be cost prohibitive.
Oh, it's all nice in theory, but there's gotta be limits.
I want nowhere near that level of information from my donor. I'm thinking more along the lines of, "Any horrible genetic diseases I should know about? Whatcha look like? What's your IQ? Okay, great, I'm done!"
Re # 5
I do agree that it is unlikely that any donor will donate if they feel they are tied to providing continuous information throughout their life. But the concept I believe is that if you are willing to share your genetic material, even if for a price, the donor must acknowledge some responsibility to the individuals conceived from it. Very altruistic goal certainly but I agree it can be seen as a burden depending on the donor.
Re #8
Many infertile couples will undoubtedly balk at this requirement. Myself I am not sure the concept has ever been a problem as I know many couples who adopt who had to go through this and I always wondered why DC families were not subject to the same issues. Probably because the govt does not look at donor gametes as they do living breathing babvies / children. Individually neither gamete (egg or sperm) alone is a living being so perhaps that is why the idea of counseling has not occured yet.
Ryan - Thank you as always for your comments. I appreciate the time you contribute to this blog. - Eric
No problem, Eric. Thanks for the thanks! It's good to be appreciated, I guess.
Now, I agree on number 8 for prospective parents but not for donors. Donors I couldn't care less about, generally. My mother shouldn't have been allowed to have children through artificial means and even a cursory examination would have shown that. (And then we wouldn't have me...)
Now, I hate to quibble, but gametes and sperm both are alive. They can't live alone for long periods of time, but no where in the process is unliving material exchanged. I guess you could think of it like produce, though. It's alive for a short while until consumed or spoiled.
*shakes head* Dear god I'm mercenary.
All sound like great objectives. I agree they may scare a lot of people off, others may not need that level of information, and may be difficult, in practice, to achieve these objectives fully for all families (but isn't that the case for any family?). However, toting up all the pros and cons, not sure the above list is problematic enough to walk away from those objectives. Also depends how you use some of these tools (eg counselling).
I guess when discussing these sorts of ethical issues I always like to see it acknowledged that this is only a part of the picture in terms of tackling infertility. So for example, we work on making donor conception more ethical. We work on making adoption more ethical (including social support for those who choose to parent rather than place children for adoption). At the same time, we should work on making "traditional" ART more accessible, and refining it so that more couples are able to be treated successfully. My hope, I guess, is that when people have true options they will act ethically in whatever path they choose, and can be held to higher ethical standards.
If that makes sense. And I know this is a broader thing than you're working on personally, but I dislike the tendency of some people to respond to ethical dilemmas of ART by saying, "Shut it all down!" when actually, doing the opposite would do a lot to help clear up any problems.
Bea
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