Disclosure Issues From the Perspective of Embryo Donor Offspring

In an Open Embryo Donation procedure it is likely the embryo donor-conceived individuals will be told of their origin. In an anonymous procedure, however, it is up to the embryo recipient parent(s) to make disclosure decisions. Reproductive endocrinologists are normally focused on the donor’s and the recipient’s legal rights/rights to privacy and we probably loose sight of the offspring’s point of view. These next two segments will examine this potentially neglected perspective: those of the children and adults created through embryo donation.

Do Embryo Donor Offspring Have The Right to Know Their Origins?

Many donor-conceived person feel they have a perceived right and a strong desire to know their genetic origins (Shehab D, et al. 2008). From an ethical perspective, these individuals feel disclosure of their true genetic origins involves principals such as honesty, trust and respect.

Embryo donors and recipients, who may prefer an anonymous process, seem to have rights that compete with those of the donor-conceived individuals. In reality, both embryo donors and recipients have legal rights that are in direct contrast to the offspring’s moral view that family secrets shouldn’t be hidden.

There is a very vocal and select group of egg and sperm donors who feel disclosure should be mandatory. It should be understood, however, that we are probably not hearing from those embryo donor-conceived individuals who have been told of their origins, but who are less vocal, perhaps feeling that disclosure should not be mandated or legislated. We simply do not know if this is a silent minority or majority.

In many ways, there is no easy way to reconcile these contrasting legal rights and moral perspectives. Most agree, at the risk of offending those who feel differently, that in  society ruled by law, that a legal right ultimately trumps a perceived moral right. Thus, the legal rights of donors and recipients continue to prevail in this country.

That stated, if individuals are told they came from donated embryos, it is natural to expect they will want more information.

Why do Embryo Donor Offspring Want Disclosure?

While perhaps not directly comparable, those sperm and egg donor-conceived offspring who are seeking information about their donors often do so for the following reasons  (Ravitsky V, et al. 2010 & Mahlstedt PP, et. al. 2010):

  • Curious about donor physical characteristics and personalities
  • Desire a better understanding of their own genetic identity
  • Have medical concerns (medical, family and social history)
  • Want to meet the donor
  • Want to understand the motivations of the donors
  • Want to provide an ancestral history for their own children

For children born to a single woman or a lesbian couple, finding out more about the donors may increase their sense of kinship. Open-identity systems are being driven forward, in part, through single women and lesbian couple donor sperm recipients. These recipients are also the most likely to disclose because their social situation essentially requires it.

For many, the search for their donors may go well beyond seeking just simple information. In two recent studies of offspring searching for their donor sperm fathers, with about half over the age of 18 and half under, between 80-88% were intensely curious about their donor and wanted to contact them. Up to one-third desired an actual relationship with the sperm donor (Beeson DR. 2011 & Bahlstedt PP, et al. 2010). It should be understood, however, that support group studies such as these might not represent a balanced patient sample.  Donor offspring who are not bothered by the issue are less likely to seek information/support via the web and are, therefore, not enrolled in such studies. Interestingly, our recent survey on this same topic yielded nearly identical results with 82% (9/11) respondents wanting medical and/or identifying information on their embryo donors.

What do Embryo Donor Offspring Call Their Donors and Recipients?

Here are some terms commonly used to describe embryo donors and embryo donor recipients from the perspective of the offspring who have been told they were created though embryo donation:

Embryo Donors

Embryo Recipients

  • Donor mom/dad
  • Embryo donor mother/father
  • Genetic mother/father
  • Biologic mother/father
  • Mother/father
  • Social mother/father
  • Legal mother/father
  • Nongenetic recipient/parent
  • Adoptive mother/father

These important labels have emotional connotations and I have listed them here in my personal order of preference.

Are Reproductive Facilities Prepared for Disclosure?

In general, reproductive facilities may not be adequately prepared to handle embryo donation disclosure issues. Medical providers’ first reaction will be to protect their patients, the donors or recipients. Nondisclosure of medical information is actually required by state and federal statutes and clear consent must always be provided before medical/identifying information is released to any third party.

Most reproductive facilities are totally unaware of the adoption literature that universally advocates disclosure. Clinicians will want conclusive embryo donation studies before they will consistently recommend and comply with disclosure. They will also want to be insulated from any legal consequences should disclosure occur.

Most medical practices will be operationally challenged to have records available years after procedures are performed. Most states require medical records to be retained for seven years. The FDA requires charts involved with third party conception techniques to be kept for 10 years, while the ASRM suggests they be stored indefinitely. Being able to identify those particular charts from the others charts is a logistical challenge. In my practice, we color-code the charts involving any type of donor material, making them easy to pull and save.

In the case of natural disasters, paper charts may be destroyed. It is common sense that the medical practice should also save the information in electronic form with offsite back up. Keeping in mind that electronic document formats are constantly changing, we currently suggest documents be saved in the common “pdf” (Adobe Portable Document Format) file format, and keep the medical and identifying information separate.

I also feel embryo recipients have a responsibility to keep the information about their embryo donors protected and safe just in case the practice’s medical records are ever lost or deleted.

We will continue this discussion, on disclosure issues from the perspective of the embryo donor offspring, tomorrow. Included will be discussion of whether or not reproductive facilities are prepared for disclosure, long-term consequences and how to tell the offspring. The reference list will also be posted with the second half. Stay tuned!

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