Let’s Talk About Genetic Half-Sibs

Let’s Talk About Genetic Half-Sibs

Let’s talk about egg donor conceived children and the very real expectation that a child whose parents relied on an egg donor for family building is likely to have a significant number of genetically related half-siblings. Let’s talk about what we can be doing, as professionals, to learn from sperm-donor conceived children. How can we better our policies and practices with respect to these egg donor conceived genetic half-sibs so that as these children reach majority age, we have better answers when they come asking about their donor and more information to offer about their genetic tree? What can we learn from practices of the past to do better work on behalf of this new population?

Recently, there has been some buzz about “shared donor egg cycles”, a practice, after much consideration and thought, I have decided may meet an immediate need of lowering donor egg costs for recipients (a very real need) but does not, it seems, give consideration to how many genetically related children will result from each (shared) donation. Even though ASRM suggests that donors limit themselves to 6 cycles and even if we, as professionals, are committed to so limiting donor activity, most programs view a shared cycle (with sometimes more than 2 recipients per donation) as a single cycle. A donor, compliant with the ASRM 6 cycle limitation, may have, before retiring, donated to 10, 12 and at some practices, significantly more recipients. Whether we decide that this is acceptable or not, whether or not we feel that making egg donation accessible to a more financially limited patient pool is a compelling argument for shared cycles, we have to talk about half-sibs. We have to talk about the fact that despite several tremendous efforts to track donor activity (tipping my hat to Wendy Kramer and the Donor Sibling Registry) we really do not know, especially with donors who both clinic and agency hop, how many children result from the totality of a single donor’s donation activity (shared cycles or not). How can that be okay? We know that because these donors are young, they are likely, most of them, to go on to have their own children. We know that with the success of egg donation and with an emphasis on single-embryo transfer, that even recipients of shared donations may continue to build their family beyond the child(ren) conceived during the fresh donation cycle and we have to acknowledge that all of this results in a lot of genetic half-sibs.

If we further the discussion and address the practice (at both clinics and agencies) that many anonymous egg donors are not informed of a cycle outcome, we perhaps see a alternative family building option with intentionally (?) placed disconnects between children who, as a result of ART, are otherwise genetically related. We know, because we hear it from the sperm-donor conceived community, that these disconnects cause harm and I think that we have to do better. We will, someday soon, have to answer to adult-aged egg donor conceived children and I suspect that they will want answers better than what we have, to date, been able to provide to sperm-donor conceived children.

(I was recently informed by a colleague that “most donors” do not want to know whether or not a child was born following her donation. Really? I’d love to see data compiled from surveying “most donors”. Since we do not have a central registry of donors, I am not sure how this colleague accessed and then surveyed “most donors” and would suggest that what we have, at best, are anecdotes that are being relied upon by clinicians, agency owners and others in a self-serving manner.)

At Law Offices of Amy Demma, I counsel donors to be thoughtful, informed and forward thinking about their donation activity and although I discourage shared-cycles and while we do our best to track donor activity and number of the live births attributed to each donation, I still fear that even at our small, very conservative practice, we just may not be able to provide satisfactory answers to the children we all helped come to be.

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