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Episode 94 Transcript

Ep 94 Transcript | Embryo Donation: Balancing Choice, Ethics, and Regulation in ART

Welcome to Fertility Cafe, the home for every conversation exploring alternative family building through IVF, surrogacy, egg, sperm, and embryo donation. Our host, Eloise Drane, alternates episodes between educational shows, covering specific topics and guest narratives for further insight. For a mastery understanding and confidence in all thing’s alternative family, subscribe to Fertility Cafe.

Hey there, Welcome to Episode 94 of Fertility Cafe. I’m your host, Eloise Drane.

In 1978 Dr. Patrick Steptoe performed a Cesarean on Lesley Brown, and the world’s first “test tube baby,” Louise Joy Brown, was born weighing in at 5 pounds 12 ounces. Creating a child outside of the marital bed was an undeniable revolution in assisted reproductive technology. The term test tube baby was sensationalized and a little ridiculous, but eventually, people got over the shock and the novelty of it. IVF capability soon reached the US and the rest of the world.

Flash forward to 2023 when over half a million IVF babies have been born in this country. The multibillion-dollar fertility industry is now booming, and experimenting with business models that are changing the American family in new and unpredictable ways. Those desiring donor eggs and sperm are now able to select from detailed checklists of physical and intellectual characteristics.

In episodes 36 and 76, we examined some of the personal choices involved in donating or receiving donated embryos. We talked about the growing popularity of embryo donation, as well as the lay of the land in terms of some of the emotional and legal ramifications of this area of ART. We also touched on the post Roe v Wade climate that threatens to undermine reproductive health and the entire fertility industry as well.

In this episode, I’m shifting the focus to the supply that has cropped up to meet the demand for donated embryos. This is a deep dive into the history of embryo creation outside the womb, I’ll cover the barriers that exist for so many people that cannot access this family building option, what is being done to address it and shine a light on some of the gray ethical areas that exist in this exploding industry.

So, let’s get into it.

We did touch on terminology in past episodes discussing the distinction between embryo donation and embryo adoption. While the terms are often used interchangeably, the correct term is embryo donation. Because even though this is complex terrain, most people do not define an embryo as a child.

By using the term embryo adoption, there is an attempt to afford full moral, ethical and most importantly, legal rights of personhood to the embryo itself. It is well known that this country is divided with respect to the morality of abortion. If the embryo were given full rights of personhood, this would inevitably result in the outlawing of legal abortion. So making the distinction in the terminology is really important.

In third-party reproduction, embryo donation is when unused embryos remaining from one person or couple’s IVF treatment are donated to another person or couple. IVF often creates an excess of fertilized embryos, which an individual or couple may opt to cryopreserve for future frozen embryo transfers if the initial treatment is unsuccessful, or in order to expand a family. Once a family is complete, however, frozen embryos may remain.

To contextualize the current embryo donation situation, let’s talk about the rise of infertility. According to the CDC, 12% of American women 15 to 55 — 7.3 million — have used some sort of fertility service. The use of ART has doubled in the past decade. Most couples use their own eggs and sperm turning to doctors to facilitate pregnancy through IVF. But the use of donor embryos have spiked in recent years.

From 2004 to 2019. A national study on embryo donation found that there were 21,000 donated frozen embryo transfers in the U.S., resulting in nearly 8,500 live births. I’ve included a link to the study in the show notes.

To date, there are approximately 1 million cryogenically frozen embryos in the U.S. There are several options couples have for the disposition of remaining frozen embryos, including: embryo donation to another individual a couple who was growing their family, donating embryos to research, or advising the clinic they are working with that they would like those embryos to be thought and discarded and not used for any future purposes.

Far from a level playing field, third-party reproduction procedures are costly, creating financial barriers for many LGBTQ+, infertile heterosexual individuals and couples who want to start a family of their own. The average cost of embryo donation ranges from $2,500 to $6,000. While the average cost of an IVF cycle is $12,400.

Success rates, as measured by live births per embryo transfer, depend on the embryo’s quality, the egg donor’s age, the number of embryos transferred, and the embryo’s developmental stage when frozen. According to data from the CDC, the live birth rate with embryo donation is 43-45%. So clearly, the cost could go up considerably if several IVF cycles are required.

Another barrier that exists is prejudice against LGBTQ+ individuals and couples. Since you’re dealing with private agencies, they are free to discriminate against anyone they like. So even though same-sex marriage was legalized on the federal level in 2015, it doesn’t prevent rejection or discrimination against the LGBTQ+ community when it comes to building a family.

Snowflakes Embryo Adoption Program in Colorado was the first embryo adoption organization in the United States when it opened in 1997. It recently celebrated the 1,000th birth of a child to a family that had “adopted” a frozen embryo. The organization operates much like a typical adoption agency, requiring background checks in home studies and matching donor families with families who want to use their frozen embryos. Snowflakes does not have a policy that prohibits single parents or gay couples from adopting embryos, but adoptions to those families are rare because the matching process is driven by the desires of the donor. And by and large, the people who are donating embryos to their program or looking for heterosexual couples.

Snowflakes also dictates how “adopted” embryos are to be managed. For example, one couple signed a contract agreeing to adopt all seven embryos from a particular couple who donated them 20 years prior. Furthermore, they were contractually bound to implant any embryos that survived the thawing process. Under no circumstances could they thaw the embryos with the purpose of throwing them away. And no genetic testing on the embryos were allowed. The intended parents were also prohibited from selective reduction, meaning they could not abort a fetus if they implanted multiple embryos and learn they were having triplets or more.

If they were more viable embryos than they wanted to use, they would have to return them to the donor family and Snowflakes, not donate them to science or let them die.

Another agency, the National Embryo Donation Center located in Knoxville, markets itself as a nation’s most comprehensive, non-profit embryo Donation Program, and has received national media attention for its work on embryo adoption.

But on the question of who can adopt an embryo, nestled in the organization’s FAQs, is a stipulation: only heterosexual, cisgender couples married for a minimum of 3 years can adopt from the NEDC.

The organization is transparent in its Christian beliefs. The group is concerned primarily with honoring “God’s design” as stated in the Bible. So, if you don’t fit in the kind of union that NEDC sees as ordained, you’re out of luck.

Which brings me to the subject of regulation, or the lack thereof, in the world of embryo donation. Because abortion is such a hot-button issue in this country, lawmakers are wary of addressing assisted reproduction. Other countries, such as Canada, the United Kingdom, Sweden, Germany, and Australia, heavily regulate many aspects of ART. But ART, specifically embryo donation, is still very much uncharted territory. Marcy Darnovsky, executive director of the nonprofit Center for Genetics and Society, in an article in the Washington Post, refers to the U.S. as the “Wild West” of the fertility industry.

Just to be clear, I fully support exploring ways the fertility industry can lower costs and increase access to assisted reproductive technology. But the lack of regulation is concerning. The “Wild West” is reflective of the fact that we are a capitalist society. So now you see on one hand this clear growing demand for embryo donation, and on the other hand, the business models that are popping up to supply that demand.

But with these models, questions abound about the recruitment of donors; the ethnics of screening and selecting embryos for physical characteristics, the ownership of the millions of unused eggs, sperm samples, and embryos and long-term storage, and the emerging ability to tinker with embryos via the gene-editing tool CRISPR.

So, let’s talk about some of the business models that exist for these high-tech babies, and take a closer look at some of the moral, ethical, and legal objections that are cropping up.

When it comes to IVF via donated eggs, one couple interviewed in the Washington Post article, were told a set of eggs in up to 6 attempts at embryo transfers, cost $55,000 — none of it covered by insurance. But as they studied the material from one fertility clinic they were considering, they discovered that they offered a huge range of payment options neatly outlined in a nine-by-six grid, 54 possibilities and all. If this intended parents split the eggs with one other mother, the costs would go down to $39,000. If she split the eggs with two other mothers, the costs would be $30,500.

The Intended Father noticed that they could cut the cost even more to $24,500, if they agreed to use only one set of eggs and forego the right to ask for more. His wife initially was put off by the idea of sharing; she feared that her offspring could unknowingly meet a half-sibling and fall in love. But more research reassured her that such a meeting was mathematically unlikely, even for half-siblings living in the same geographic area.

What sealed the deal was the money-back guarantee. If she didn’t get pregnant, or they opted to stop, they would get a refund. This guarantee is the hallmark of that particular fertility clinic. One of the founders drew criticism when he pioneered the model decades ago. He said and quote, “People were calling it ‘contingency medicine’ and saying it is unethical.” Today, he said, about three-fourths of programs nationally offer some kind of guarantee.”

It’s not that I object to the concept, but again, it’s sort of a next-level commodification of family building. To take it even a step further on the embryo donation front is the business model most people don’t know anything about, but one Fertility Center in California is pioneering what some refer to as the “Costco model” of baby making, creating batches of embryos using donor eggs and sperm that can be shared among several different families.

That model has served to highlight a preference among many would be parents for tall, thin, highly educated donors. One bioethicist interviewed in the article says, “it’s a little unsettling to be marketing characteristics as potentially positive in a future child. But it’s hard to think on what basis to prohibit that.”

With sperm and egg donation, there is the possibility that donor-conceived children share some genetics. But in this scenario, there would actually be kids out there are full siblings. This really is a Wild West element for many reasons. If and when donor-conceived children find out that they have full siblings raised in other homes, this information could either be fascinating, disturbing, or simply just unsettling for them. If one of the intended parents freezes one of those embryos and implants it at a later date, you, as a donor-conceived child could have a full sibling who was much older than you. Or several siblings! These are really issues Intended Parents need to be educated on.

A few years back, a group of donor-conceived adults documented numerous ethical lapses in the industry, including donors who lied to prospective parents about their health histories, and other qualifications, and clinics that claim to have limited donations from several individuals — while permitting those individuals to submit hundreds of samples. They called on the FDA to provide more oversight of the cryobank that gather, store, and sell sperm and eggs. The agency said it is reviewing the matter but cannot predict when it will have a response “due to the existence of other FDA priorities.”

Another hotly debated area of embryo donation has to do with those donated to science. In the past, scientists agreed never to allow human embryos to develop beyond two weeks in their labs. For the last 40 years the rule, which is law in some countries and a guideline in others, have served as an important stop sign for embryonic research. It has provided a clear signal to the public that scientists wouldn’t grow babies in labs. To researchers, it gave clarity about what research they could pursue.

I’m not really going to dive too deeply into the sector since it’s unrelated to ART, but clearly, you can see where moral, religious, and ethical concerns come into play when dealing with early stages of human life.

One state to put legislation in place regulating embryo donation is California. Last year, Governor Gavin Newsom of California signed a bill that codify certain embryo donation protocols into state law. Specifically, it promotes embryo donation by ensuring that donors are never considered the legal parents of children that are born from their donations. The bill received bipartisan and unanimous support, which is a great sign that there are certain basic concepts everyone can agree on.

It’s a good starting point because including embryos in the law is a substantive and helpful building block for the law to address more complicated legal issues in the future. Namely, the question of what to do when there are multiple claims and competing interests as to any given embryo. There have been several cases in which a divorcing couple has embryos but no children. This presents an issue if one party wants to use the embryos or both parties want them because there is no law that regulates any of this.

Jennifer Lahl, founder and president of the Center for Bioethics and Culture noted that “the law and our courts have not settled the matter of what a frozen embryo is. Is it a person, afforded rights, or is it property, decided using contract law?”

She cited Jeter v. Mayo Clinic Arizona, a 2005 case involving the Jeter couple who had undergone in vitro fertilization and had their embryos cryopreserved in stored at a clinic. The Jeters alleged that the clinic’s negligence resulted in the destruction of those embryos, including a claim for the recovery for the loss of “irreplaceable property” in their complaint.

As Lahl noted, the case deemed that embryos were “not property” but stated that they should be afforded “varying degrees of special respect depending on the issues involved.”

“What would be the ‘special respect’ owed to the embryo, and who would decide what that is?” She asked. “This is just another example of where reproductive technologies have moved forward without any serious ethical or legal reflection.”

As science and tech evolved to meet the increasing demand for people wanting to use ART to build families, we have to keep it in check with regulations and always take into consideration the ethical considerations as well as the impact on societal values, religious beliefs, and moral standards.

As someone who works with intended parents, donors, and surrogates, I can’t emphasize enough the importance of education for anyone involved in either end of embryo donation. It’s critical to understand your choices, legal rights, as well as the rights of your donor-conceived child.

There are so many great resources out there for anyone involved in third-party reproduction, including genetic counselors, and EM•POWER with Moxi, an education organization dedicated to empowering choice and community in embryo donation, which was founded by past guests of the show, Maya Grobel and Gina Davis.

It really is incredible to see how far we’ve come in third-party reproduction, and it’s exciting to know that embryo donation is making it possible for more people than ever to create families. This isn’t our first show on embryo donation, and I’m sure it won’t be our last!

Thank you so much for listening. If you found this episode helpful, please rate Fertility Cafe on your favorite listening platform and share this episode with anyone you think could benefit from hearing it.

Tune in next week for another amazing episode on Fertility Cafe.

Until then, remember, “love has no limits — neither should parenthood.”