Monday, February 27, 2012

"Open Adoption" of Embryos

From TODAYMoms blog:
Carmen Olalde really wanted children. She went through years of infertility treatment and IVF, then a difficult pregnancy, to have her twins. And as her twins turned four, she realized that two kids were enough.

But she still had four frozen embryos from her last IVF cycle. And so she made a decision that put her at the frontier of reproductive ethics. She donated the embryos to a Virginia couple also suffering from infertility, whom she met via a website ad – on the condition that the donation be "open," and they send regular photos of any resulting child and hopefully keep in touch by e-mail and phone.

“My motherly part of me thinks that I think that I would at least want to know what happened to them, that it would hit me once in a while that I have these genetic children out there. But at least I will know that [the couple] Karolina and Oscar have them and that they’re happy, they’re OK,” says Olalde.
Meet the modern "open adoption" family -- at least two hopeful humans and one embryo, brought together by science, trust, complicated legalities and a goodly bit of luck.

Many post-birth adoptions these days are “open,” in which the birth and adoptive families know each other’s name and perhaps have some degree of contact. Pre-birth arrangements may be following suit, though the law hasn't yet caught up.

* * *

The donation arrangements are murky legally, as well as emotionally. Adoption laws only cover children already born, so families involved in embryo donation usually sign forms and contracts dictating "ownership" of the embryos, often hiring their own lawyers for private agreements. Some follow up with a legal adoption after a child is born to further secure their rights.

Margaret Swain, an attorney whose practice focuses on adoption and reproductive technology, says children born from donation will likely appreciate an open arrangement, even though parents might initially feel uncomfortable.

“Following the lessons learned from adoption, and what we are hearing from children born through gamete donation, some degree of openness is probably a good idea. Children born of gamete donation -- donation of either egg or sperm -- usually like to know more about the person who donated, or to meet that person,” she says.
"Adoption" is the word the article uses, which I consider a misnomer when it comes to embryo donation.  "Open donation" would be more accurate here. And the article needs to straighten out another misperception it creates -- by talking about the fact that openness in embryo donation is legally murky, they create the impression that there's no legal murkiness in open adoption agreements.  Indeed, in most states such agreements are still not legally enforceable.

16 comments:

Anonymous said...

Actually my can't the term adoption be used?

I realize there is no way to know on the outset if a viable birth will occur, but once it does, the route to get there is still one woman/man relinqueshing a part of their genetic material/potential offspring to be raised by another.

Granted the embryo is carried to term by another woman....so hence my question then and I think I spotted this query before on this site and recently.....does carrying the baby, despite it not having any biological "ties" to the mother, deem it less than an adoption?

Is it the biological link then or the pregnancy duration itself that signifies motherhood for those who so oppose adoption? Or both?

Anonymous said...

sorry for the typo...I meant, "why" can't the term be used?

Karen said...

I think it's AWESOME!!

Linda said...

For me, anon, it is both biology and the actual pregnancy itself. While "donor kids" (speaking specifically about embryo, not sperm) do not have the trauma of being separated from the Mother who carried them for 9 months, the Mother who carried that child will still be a genetic stranger to her.

It is interesting to me that some couples chose to go through a formal "adoption" process after the child is born. I was under the impression the "legal mother" was the mother who gave birth to the child. I guess they want to cover all bases, so to speak.

Motherhood to me (and I get chastised by "some first Mothers for my opinion) is all of those things- biology, pregnancy, and raising us.

I would hope that embryo adoptions/donations carried to term would have some transparency involved, even visitation, etc. The child is still being raised by genetic strangers, and it would be in the child's best interest to have a relationship with his/her natural family. It is much easier for people to lie about a child's origins when the child is donor conceived/embryo adoption/donation, so perhaps a formal adoption process AFTER the child has been born may help prevent that.

Craig R. Sweet, M.D. said...

Having treated infertile couples for almost 24 years and performing embryo donation for 11 of those 24, I believe I may be able to offer a reasonable perspective and level of experience to this discussion.

When patients have excess cryopreserved embryos, they are left with the choice to use them, donate them to science or donate them to patients in need. It is a very difficult decision but keeping them cryopreserved indefinitely, abandoning them or discarding them are unpalatable options. Deciding to donate them to patients in need is a loving process giving their embryos a chance at live and an infertile patient or couple a chance at parenthood.

Embryo donation procedures are often anonymous but some may be open. It is the embryo donor that drives and decides which procedure will take place. In turn, it is the embryo recipient that must agree to an open process and be responsible for all fees involved, which are usually twice that of an anonymous procedure.

The issue of disclosure is an emotional one. While embryo donation may be similar in some ways to adoption, there are important differences. Adoption is generally accepted by most religions but there are some religions that forbid the use of the assisted reproductive technologies. Disclosing to family, friends and the donor-conceived offspring could result in judgement, isolation and even excommunication of some embryo recipient families, so universal disclosure is probably not best. It is a personal decision for all parties involved.

The reality is that we don't yet know what the long-term outcomes will be of an open process. Certainly, we have to work very hard at finding and keeping our friends, so the outcomes of the somewhat forced relationships between the embryo donors and their family, the embryo recipients, the embryo donor-conceived offspring are really uncertain. It is doubtful that everyone will stay one big happy family but the donor-conceived individuals may indeed benefit by making attachments to their genetic siblings raised in the donor's home. Only with time and continued research are we going to be able to counsel both donors and recipients regarding the advantages and disadvantages of an open process. Until then, we should be cautious and allow the donors and recipients to find the process that seems best for them.

At the risk of boring the reader, I recently summarized a great deal of published information on our blog, www,EmbryoDonationBlog.com. Please search under "disclosure" for the somewhat long but comprehensive discussion on the topic.

I am proud of the difficult decisions that both embryo donors and recipients have to make during this process. I would reserve judgement unless you have walked in their shoes and made some of the same decisions they have had to make. Until then, the embryo donors, embryo recipients and the donor-conceived children could use all of our support on their amazing and sometimes difficult journey.

Craig R. Sweet, M.D.
Reproductive Endocrinologist
Embryo Donation International

LisaLew said...

Wow - now there's forward thinking.
I've been despaired by the hush hush anonymity surrounding ARTS.
It does parallel the old days, when children weren't told they were adopted.
I foresee OTC DNA kits at CVS.
So, those who haven't disclosed the donor status to the child may need to think through the power of DNA testing!
Wouldn't it be confusing to find out our parents didn't tell us the truth about our genetics? We know that has happened to others. This example strikes me as learning through past mistakes. If they meet, enjoy each other's company, too?
Bravo.... If it is ok with the Donor Child. They mustn't force a relationship at any time unless they feel it's in the best interest of the child.
I, too, wonder about Malinda's comment on ability to enforce the wishes of the donor family.
What if the recipient family changes their mind?

Assembling Self said...

Where are the rights for these children that will be born as a result of embryo donation? I see talk of the rights of biological parents and adoptive parents and it seems it revolves around their wants, needs, and desires being protected. Where does protection come in for the best interest of the future children who are being separated from their biological family? Neither children or embryos should be treated like interchangeable "parts". If couples want to do what's best for these "leftover" embryos they need to rethink the process and realize the long term ramifications and implications these complicated transactions are creating for these future children. Once again, just as in infant adoption, these future children are bound by laws, rules, and regulation, made by others without thought to their having recourse to biological connections, medical history, or identifying information if they so request, need, or simply want it, and or are treated as commodities for exchange. Once again genetics are being whitewashed when it comes to the pursuit of creating "families" aka "adoption" along with the rights of the children adoption is supposed to "provide for". People need to quit playing God with lives.

Amanda said...

Dr. Sweet, what an interesting and compassionate reply. However, I could not help but notice that in your thoughtful assessment of the rights, needs, and decision-making process involved, you left out the rights, needs, decision making, and feelings of one person.

One really, really, central, important person: the indidivual being created.

I understand that it is often an ethical and difficult quandry to determine when donor's and recipient's rights end and child's rights begin in the beginning stages before a child has been created. I am aware that the embryo is considered the property of the donor, governed under property law (unless things have changed since I last read), and theirs to give, keep, or have destroyed.

But donated material will eventually become a child. A child who is not property. A child who in fact is: a person.

According to the UN and UNICEF, all children have the right to be raised by their natural families when and if ever possible. The Rights of the Child also states that children have a basic human right to knowledge of their biological roots and ancestry.

We need to make sure we speak up for children being intentionally created in this way--no one should ever intentionally rob them of their basic human rights.

And no one should want to! Isn't parenting about putting the rights and needs of your child before your own to begin with? Why would removing anonymity from this process when it comes to child's rights ever begin to be an issue?

There is actually a bit of material out there on the thoughts, feelings, and rights of donor conceived persons (several countries have even outlawed anonymous donation. New Zealand requires disclosure of both sets of parents on the birth certificate with GB considering similar legislation). Probably the first most telling work on the topic that could be compared here is "Lethal Secrets" by Pannor and Baran." Other very interesting works (I read a lot of Psychology and Social Work journals) have been composed since then). There are many donor conceived blogs one can read as well. With the popularity of open adoptions as well as many donor offspring stating, the same as many closed-adoption adoptees have, that they do not appreciate the anonymity, I think it is safe to say we've long had enough information to review the assess the necessity for openness in donor conception.

Best,

Amanda

Amanda said...

To the first anon, socially, the term adoption might be correct. Legally, donation and adoption are completely different things.

Donation is governed by property laws because embryos are not considered people. The future children are born to the parents who will do the parenting. They already have parenting rights because they are the ones who gave birth.

Adoption is governed by adoption and family law as it involves an already-born child and an in-tact family deciding to sever ties and rights and fuse to a new family.

There are people who would say you should not call it "adoption" because people think so highly of adoption, associating the donation/conception of "snowflake" babies with "adoption" means people will ask less questions about ethics regarding the process and rights of the conceived individuals. I would probably agree that this is a problem with calling it "adoption," however, as an adoptee, I acknowledge that these conceived/born individuals have circumstances much like mine and have loads of compassion for their situation.

Amanda said...

Malinda, I wasn't aware that in embryo adoption, an adoption had to take place after the birth--is this the case in all states and situations?

What is it for, to make sure no one can sue the biological parents for child support?

theadoptedones said...

Dr. Sweet,

Just how do you justify anonymity being an acceptable choice leaving the child created and their future children without the ability to keep their family health history updated?

I am always amazed that it can be so easily swept under the carpet by those in reproductive medicine, when your family health history plays such an important role each and every time you go to the doctor.

Genetic testing is no where close to providing the information that can assist in your care...

I agree with Amanda's first comment as well but wanted to also add my favorite pet peeve to the mix.

iAdoptee said...

Dr. Sweet,

Just wanted to mention that the "embryos," "embryo donor conceived offspring," "cryopreserved embryos," and "donor conceived children" you speak of do eventually become adult human beings.

Donors, recipients, embryos. Where do the human beings that result from the shuffling around of embryos to various uteri fit in?

As a physician, I would at least think that you would recognize the need for the "embryo" to know of his or her actual genetics. I'm assuming that you have your patients fill out medical history forms? Or do you just sweep that disclosure issue under the rug along with the basic right to know how we came into the world and from whom?

Primum non nocere, doc.

malinda said...

Amanda, a formal adoption after a birth from a donated embryo, as described in the article, isn't necessarily required legally.

All manner of ARTS have created ambiguity in what a parent is -- is it the biological/genetic progenitors? the gestational progenitor? the person(s) "intending to parent?" States who have addressed these issues have, at times and in some cases, chosen each of the 3 as the legal parent!

When there is that uncertainty, a particularly risk-averse person would want to look to the most "certain" law that seems even vaguely applicable. So if there is confusion about whether the donors or the recipients are the legal parents, we can solve it all post-birth by treating it as if the biological/genetic progenitors are relinquishing birth parents and the gestational progenitor is a stranger who is adopting the child.

Whether it is actually legally necessary to do so would depend on the most recent law of the particular state.

As if ARTs didn't already create identity confusion, add being adopted by your "tummy mommy" into the mix -- what a mess!

Craig R. Sweet, M.D. said...

At the risk of further upsetting the readers, I felt I needed to respond to some of the comments.

The story was about the parents and their decisions. The story was not about the perspective of the child. Before you judge me so harshly, understand that I was responding to the story itself. If you take the time to read my blog on disclosure (www.EmbryoDonationBlog.com) you will see that I have absolutely taken into account the emotional and ethical rights of the donor-conceived children. I agree that we have been somewhat remiss in taking their perspectives into account and discuss this as so in my blog and other writings. The conflict arrises from the differences between what may be perceived as a "moral right" compared to a "legal right".

The comments by "theadoptedones" suggested that we don't provide a tremendous family and genetic history. Quite the contrary, a tremendous amount of information is provided to the embryo recipients. In fact, we also have a system in place so that medical information is updated by the donors and communicated to the recipients when significant. In addition, if a new disease is found on the donor-conceived child, this information is also relayed back to the embryo donors so they can use it to their benefit for their family.

So, let's try not to judge too harshly or quickly. Due to limited space, I couldn't address all the issues but simply wanted to address a few of the comments contributed thus far.

Looking forward to the respectful discourse-

Craig R. Sweet, M.D.
Reproductive Endocrinologist
www.EmbryoDonation.com
www.EmbryoDonationBlog.com

theadoptedones said...

Dr. Sweet,

I did not suggest you do not require health history at the time of the donation. Yet I do question even that - unless the "donor" already has a documented family health history to provide due to the age of the donor and/or the education level of what is important and has happened in their family history. Most young people wouldn't have enough knowledge to fill it out. I suggested in my first post that they would be unable to have updated current family health history - distinct difference.

Would you elaborate on how you educate both sides on updating, and in reality what percentage actually do update or even provide change of addresses? Do you provide guidelines of how frequently that update should occur? And if your clinic closes - what happens then.

Also what happens in cases where the donor conceived are not even told - they live their lives believing someone else's history is their own. Do you work with patients who do not intend to tell the children or do you decline to have them as patients?

Also, when embryo's are "donated" from the original family to another what is the process you would follow? What about sperm donors to multiple clinics and/or the sharing of that sperm "between" on-line friends. What about the donor eggs from countries around the world - how does that updating family health history work then?

Sitting back I can see so much potential for harm industry wide - over and above the few points noted above - that it amazes me that there are not mandated requirements be followed - not just a best practices manual with little or no teeth to enforce.

theadoptedones said...

Dr Sweet stated: "Looking forward to the respectful discourse-"

Guess not...