NPEs

By Kara Rubinstein Deyerin

Usually, when we think about people opening a Pandora’s box by taking a direct-to-consumer DNA test, we’re thinking about NPEs (not parent expected)—people who learn through such a test that their parent(s) is not genetically related to them. But now donor-conceived (DC) people are wondering if when they test they’re opening a different sort of Pandora’s box.

The decision in a legal case called Teuscher vs NW Cryobank in January 2020 caused some members of the DC community to pause before spitting into that little vial. If you’re considering a test for your DC child (under the age of 18), it’s important for you to know the ruling should not affect your decision.

First, let’s talk about terms. NPE is used here to broadly to include anyone who learns their parent(s) is not their genetic parent(s). This can be due to donor-conception, adoption, a tryst, or an assault. The term DC is used here because it’s the most widely used, even though the term “donor” conceived is very problematic. Most DC people were not conceived by a donation. Assisted reproduction is an industry. People were paid for their sperm or eggs. A better term hasn’t emerged yet. “Donor” disguises the complex issues that arise from creating a human in this fashion. Maybe “dealer conceived” is better if we try to stick with the DC initials. But I digress.

A short overview of the facts of the Teuscher case: Danielle Teuscher gave birth to a daughter after conceiving with the use of sperm (Donor #2744) purchased from NW Cryobank. She specifically requested an open ID donor so her child at 18 years old could know who her genetic father was. When her daughter was four, Teuscher purchased a direct-to-consumer DNA test with 23andMe to learn about her daughter’s genetic health factors as well as her ethnicity. While men who sell their sperm to fertility clinics are asked questions regarding their genetics (health and ethnicity), there are plenty of examples of misinformation or omission of information. In today’s legal climate, there are no consequences for such actions. As a mother, Teuscher should be allowed to have access to all of her daughter’s medical information to make informed decisions about her daughter’s health.

When the results arrived, her daughter matched with a close relative, likely a grandmother, who indicated she was open to contact by her matches. When Teuscher reached out to the possible grandmother, the match responded that she was unaware of Teuscher’s daughter’s existence and requested no further contact. Teuscher did not contact the grandmother again.

Shortly thereafter, as reported here previously, Teuscher received a “cease-and-desist” letter from NW Cryobank. The company demanded she stop reaching out to the donor and his family, as this was in violation of her contract. To add insult to injury, it also informed her she would no longer have access to its sibling registry and the other vials of sperm she’d purchased for future use. NW Cryobank seized Teuscher’s stored sperm because it believed she had violated the terms of the contract by connecting with Donor #2744’s family and, therefore, the remaining terms of the contract were void. Teuscher sued NW Cryobank to ensure Donor #2744 remained classified as an Open ID, since that was the term under which she purchased that specific sperm. She also wanted to regain access to the stored sperm, to Donor’s #2744 medical updates, and to the sibling registry. This case was brought in Spokane, Washington in Federal Court because that’s where NW Cryobank is physically located.

On January 31, 2020, Judge Thomas Rice ruled on the case. He dismissed Teuscher’s claims for emotional distress and violation of the Washington Consumer Protection Act for changing Donor #2744’s status after use of his sperm. However, the judge did not rule on claims for violations of the contract due to the seizure of the sperm Teuscher purchased for future use as well as all claims for wrongdoings against her daughter. This leaves the case open for Teuscher to argue for her daughter’s rights under the Consumer Protection Act and against what essentially is the seizure of her property. This case still is in the beginning stage and has many rulings to come. Once the judge has ruled on all claims made by Teuscher and her daughter, Teuscher may decide whether to appeal any of the rulings.

An appeal of the Consumer Protection Act ruling would benefit the DC community since NW Cryobank acted outside the scope of the contract by adding a penalty—the seizure of the stored sperm—that was not specifically outlined in the agreement. Leaving the verdict as is may embolden fertility clinics to add additional penalties for any similar breaches in the future.

Our legal system in the US is a common law system and, therefore, relies on court precedent in future decisions. When a person brings an action for breach of contract because one side added a penalty that was not enumerated in the contract, the judge will rely on previous judicial rulings with similar facts. Each side will cite prior cases to bolster its argument on why it should win. Both sides will also try and differentiate their cases from prior cases where the ruling does not support their arguments.

While there are many ways to differentiate this verdict, going to court is expensive. If Teuscher appeals her case and wins, this would let fertility clinics know they must remain strictly within the terms of the contract. In addition, NW Cryobank changed the donor’s designation after the contract was signed. If a seller in any other type of business acted in such a manner, it would be considered an unfair business practice.

So why did the judge’s ruling lead people to wonder whether DC children younger than 18 could still legally take a direct-to-consumer DNA test? Many are afraid of repercussions from the fertility clinic if they purchase tests for their DC children. The heart of the ruling is the judge’s discussion of whether Teuscher’s contract was unconscionable. A contract is unconscionable if it is so one-sided that one party has no real bargaining power or if some part of the contract is so unjust that it shocks the sensibilities of the court and society. Right to Know believes a contract such as that offered Teuscher is unconscionable.

Here’s what the judge had to say.

First, consider the bargaining power side of the discussion. The judge indicated that while Teuscher may have lacked bargaining power, the contract was simple, she had time to review it, she didn’t have to purchase the sperm, and she could purchase sperm elsewhere. Because she had a “meaningful” choice, could have consulted an attorney, and chose to enter into the contract, the judge found the contract was not unconscionable due to one-sided bargaining power. His discussion of the issues shows how little he understands infertility and the fertility industry. This could be pointed out in future cases to differentiate his ruling.

Those who are unable to conceive but who desire to have children may go to great lengths and spend thousands of dollars to find a way to have a child. Teuscher didn’t have a choice about whether to use fertility services because she wanted to have a child and was unable to do so without such services. Most, if not all, fertility contracts utilize the same language, restrictions, and penalties in their contracts. If Teuscher indeed had purchased her sperm from another fertility clinic, the contract likely would have been the same. This means consumers/buyers have no real choice when deciding to use the services of a fertility clinic. We must educate our lawmakers so they have a meaningful understanding of these issues.

If any part of Teuscher’s contract is so unfair that we as a society would say it goes against the public good, it would be considered unconscionable and, therefore, void. We are making humans here. A person has the right to know their genetic identity and history. In the world of adoption, over the years we’ve come to understand it’s in the best interest of children to know they are adopted as well know their genetic identities. Why should this be any different for DC children? The judge does not understand the psychological ramifications of not knowing where you come from.

The judge states, “The promise to honor the donor’s privacy interests is clearly reasonable given the contact.” But is it? Anyone who’s taken a direct-to-consumer DNA test knows you can figure out who matches are with little effort because even if your father hasn’t done a DNA test, it’s likely his uncle’s cousin has. With this information, you can determine your own matches. The court obviously does not understand this shift. And neither do fertility clinics. For the health and well-being of the child, we must move toward “open” use of sperm and eggs, because it is no longer possible to remain anonymous—that cat’s out of the bag.

The ruling states a DC child can discover genetically relevant medical information without seeking ancestry or other information that would destroy anonymity. Clearly, the judge does not understand how these tests work. You cannot separate medical and ancestral information. What is ancestral information? Teuscher’s daughter’s ethnicity? Clearly she should be entitled to this information. It’s likely the judge meant knowing who her relatives are when he referred to “ancestral information.” If a fertility clinic tries to rely on Judge Rice’s opinion here, opposing counsel should be able to easily differentiate the new case from Teuscher’s, since the judge’s language and use of terminology is not clear.

The judge’s ruling finds that Teuscher should not have reached out to the grandmother match since she agreed to not contact Donor #2744 directly or indirectly, but she had every right to the genetic information available. This means if you have a DC child, you can use a direct-to-consumer DNA test for your child. However, you cannot reach out to their relative matches. Remember, it’s only the parent(s) who are parties to fertility contracts, not the children. When a child is younger than 18, the parent is legally responsible for the child’s actions. When DC children become 18, they can reach out to any matches.

If we think Teuscher should have the right to reach out to her daughter’s relatives, then we need to change the laws to reflect this. At this time, the fertility industry remains relatively unregulated. There are no consequences for donor or fertility clinic fraud, which leaves DC children and their parents—as well as anyone seeking services from a fertility clinic—vulnerable. If someone lies about the color of a car they are selling, it’s not that big a deal. But if a seller lies about a medical problem and then sells his sperm and creates a child who develops a medical issue, that is a big deal. Parents using fertility services must have access to accurate information and all of the information our technologically advanced society can provide regarding donors and assurances they are receiving the agreed-upon goods.

Let’s not forget what we are talking about—the creation of human beings. We must do better as a society. We must work to change our laws to ensure the DC community has access to all relevant information and that there are consequences for failures to disclose, for providing false information, and for improper handling of specimens.

So, go ahead and open a Pandora’s box. See if you should be wearing lederhosen or a dashiki and find out what those health reports have to say.

By Kara Rubinstein Deyerin, co-founder of Right To Know, a nonprofit organization that educates the public and professionals on the complexities of the intersection of genetic information, identity, and family dynamics. It advocates for people whose genetic parent is not their supportive parent—not the person who raised them or their legal parent.