By Gregory LoyIn 2013, Danielle Teuscher, of Portland, Oregon, gave birth to a daughter, Zoe, who’d been conceived with sperm donated by an “Open ID” donor—a donor who’s open to contact when his donor-conceived offspring turn 18 years of age. Teuscher acquired the sperm from NW Cryobank, a Spokane, Washington sperm bank. Like other children conceived through donor sperm, Zoe not only lacked information about her ethnicity and ancestry, but she also lacked complete access to half of her medical history.

In hopes of learning more about Zoe’s heritage and any health risks she might face, Teuscher ordered a direct-to-consumer DNA test from 23andMe for her daughter. She had not attempted or intended to learn the identity of the donor, but when the results came in, there was apparently a close match on 23andMe who was willing to be contacted by matches. Teuscher sent a simple message through the 23andMe website indicating that the match’s son may be her child’s donor and that she, too, was receptive to contact. The match was puzzled, so Teuscher apologized and moved on. But the matter didn’t end there.

Soon she received a cease and desist letter from NW Cryobank threatening her with a $20,000 legal action for two breaches of a clause in an electronic agreement—one, having given her daughter a DNA test, and the other having contacted the donor’s mother. The letter warned her not to contact the donor or make attempts to discover his identity or background. Further, the sperm bank informed Teuscher that it had rescinded her access to four vials (she has five vials) of gametes that she’d paid for so that she might one day have another child who would be a genetic match to Zoe. What’s more, the company refused to allow Teuscher access to medical information updates from the donor or to be in touch with parents of other children conceived from that donor’s sperm, and it changed the status of the donor from “Open ID” to “Anonymous.” Should Teuscher use other DNA tests or try in any way to identify the donor, the letter said, the company would seek a restraining order or an injunction. Since NW Cryobank sent the cease and desist letter to Teuscher, it’s taken down its donor sibling registry, an action that harms all recipients of donor sperm and their children by preventing them from being able to connect with relatives and make other important connections for the children’s wellbeing.

In this age of widespread availability of DNA testing, many would argue both that anonymity is no longer sustainable and that a child couldn’t possibly consent to donor anonymity and waive her right to know where she came from. Still, NW Cryobank—arguing that a breach of donor anonymity could jeopardize the personal relationships of donors—took the punitive step of denying Teuscher access to her gametes and the promise of being able to bear future children genetically related to Zoe.

Not willing to sign an agreement that restricted her access and her rights, and refusing to accept that she’d not be able to conceive another child who would be a genetic sibling to Zoe, Teuscher became determined to fight back against an unregulated industry and argue for Zoe’s rights and, in the process, those of all donor-conceived offspring.

In June 2019, she struck back, filing a lawsuit in federal court in the Eastern District of Washington against NW Cryobank. In their complaint, the Teuschers’ make many claims. NW Cryobank has moved for dismissal of only three of these claims. The first of these claims that might be dismissed by the Court is that which seeks damages for violation of Washington’s Consumer Protection Act (CPA). “Washington has a strong policy through the enforcement of the CPA to protect consumers against business practices that are unfair and harm the public,” says Jill H. Teitel, Esq., of Law Offices of Jill H. Teitel, PLLC, New York, New York, the Teuschers’ lead counsel. “Teuscher has alleged that NW Cryobank’s practices were and are unfair and deceitful and negatively affect the public interest because they harm or have the capacity to injure persons,” says Teitel, adding that “Teuscher further alleges that at no time did she contract away her rights to her gametes.” Penalizing Teuscher for testing her child’s DNA was unfair. Changing the donor’s  identity designation from “Open ID” to “Anonymous” was unfair. Taking away the Teuschers’ ability—and that of all other donor recipients and donor-conceived offspring—to make contacts through a sibling registry that was promised by NW Cryobank was unfair. And masking the donor’s health updates by taking down the donor’s profile from NW Cryobank’s website was unfair. This donor had already stopped selling his sperm to the bank by the time Teuscher had purchased his sperm to use to get pregnant with her daughter, Zoe.

The second claim NW Cryobank seeks to dismiss is that the company’s contracts are unconscionable. “The complaint alleges that NW Cryobank presented Teuscher with an on-line ‘click-wrap’ agreement that didn’t permit review by a lawyer,” Teitel says. “Further, the agreement included many provisions that are biased toward NW Cryobank, for instance that any attorneys’ fees spent by the sperm bank on any court action shall be paid by the customer, which is against Washington law.”

The third claim NW Cryobank seeks to dismiss is the assertion that the company refused to acknowledge the severe emotional distress its actions have caused. The bank apparently cannot fathom that Teuscher’s rights have been trampled and that their conduct was outrageous and caused unconsionable injury to the Teuschers. It brashly questions why Teuscher would be emotionally harmed by its actions and completely denies the reality that she lost her gametes and, along with them, the hope of bearing children genetically related to Zoe.

Subsequent to the filing of the Teuschers’ lawsuit, NW Cryobank had filed a partial motion to to dismiss two of the complaint’s claims. The Teuschers’ legal team opposed that motion. When NW Cryobank failed to get that dismissal, Teuscher amended her complaint, mostly to clarify the damages and injuries. NW Cryobank recently filed its new partial motion to dismiss the three claims outlined above, including in this second motion the dismissal of Teuscher’s claim of intentional infliction of emotional distress.

An important aspect of this case is whether any outcome will have broader repercussions. Right to Know, a nonprofit organization in Washington State, is following the case closely because it’s a lightning rod, igniting issues that are central to the “Right to Know” movement. Further, this case, in effect, will shape the law on the boundaries of what a company can get away with in regard to a person’s genetic material and potential separation from relatives. The “violations” claimed by NW Cryobank appear to lend weight to the idea that it views itself as the de facto owner of Zoe’s genetic information. Adding insult to injury, NW Cryobank insists that Teuscher has no right to test Zoe’s DNA and also might be claiming that Teuscher pay for monetary damages, which begs the question, what monetary damages does it believe it has incurred?

Additionally, the contract that promised donor anonymity, as NW Cryobank interprets it, effectively restricts the rights of all of his extended relatives with regard to communication with donor-conceived individuals. It removes their rights to know or be known by all of their genetic family. Does a corporation or individual have the power to own this information without the consent of all parties involved? The courts will have to decide this and other interesting questions posed by this case, but if this is interpreted in the favor of NW Cryobank, it likely will have consequences extending beyond the Teuscher family and the donor-conceived community.

As previously noted, NW Cryobank has filed a second motion to dismiss Teuscher’s three claims. Based on the case file and discussions with lead counsel from Teuscher’s legal team, the Eastern Washington Federal Court will hear the case on January 30th to determine whether Teuscher’s three claims will be dismissed.

Teuscher also recently filed a motion to become her daughter’s representative for purposes of this lawsuit, and this issue should be decided soon by the Court.

Right to Know is following the case closely as it’s the first in the nation to fight back in this manner and challenge NW Cryobank’s aggressive practices and unfair policies. Because this ruling could have such a broad effect, we urge everyone to care and become involved. Join us in supporting Danielle and Zoe Teuscher and standing up for everyone’s right to know and own their genetic identities.

What can individuals do to help? Contribute to Teuscher’s GoFundMe campaign to help her keep her lawsuit alive. There are many expenses involved in an ongoing lawsuit, and she needs the support of our community to make a change and challenge the practices of NW Cryobank. Click here to donate.— Gregory Loy is a cofounder of the Washington State nonprofit organization Right to Know.For More Information

Read previous media reports about the case—from the CBS This Morning here and the New York Times here.

Click here to learn more about Right to Know.

Three NPEs have teamed to form Right to Know (RTK), a nonprofit organization in Washington state to advocate for the rights of NPEs, which it defines broadly as all people directly affected by misattributed parentage, including adoptees, donor-conceived (DC) people, and individuals conceived during an affair, assault, or tryst.

Kara Deyerin, a nonpracticing attorney, Gregory Loy, an active duty Navy human resource manager stationed in Oak Harbor, Washington, and Alesia Weiss, a retired RN and military veteran have outlined and begun to set in motion an aggressive set of initiatives, each based on the fundamental premise—supported by the United Nations Convention on the Rights of the Child—that everyone has the right to know one’s genetic identity.RTK, says Deyerin, has a two-pronged mission, the first and foremost of which is education—both for the public and NPEs. The organization wants to illuminate the public about what it means to be an NPE and what NPEs experience. It aims to give them a realistic picture of who NPEs are and engender understanding about the complexities of the intersection of genetic information, identity, and family dynamics. At the same time, it seeks to educate NPEs about the emotional and legal issues that may arise in the wake of a DNA surprise and help provide solutions.

When—after learning that the man she believed to be her father was not genetically related—Deyerin investigated her rights as an NPE. She was shocked to realize that she had none. That discovery drove the second part of RTK’s mission: to advocate for NPEs’ rights so that they will have what they need to heal and move forward.

The first step in setting this mission in motion is securing the funds to kickstart its initiatives, so Deyerin, Loy, and Weiss are in the process of seeking grant monies. At the same time, RTK is developing a series of conferences to be held in different locations across the country, each event, says Deyerin, designed to triage NPEs’ behavioral health issues, create a roadmap for the creation and provision of appropriate services, and build consensus about NPE rights. They’ve established four goals on which these events will focus:

1. to establish access for NPEs to their identity (heritage and medical information);
2. to safeguard access to records, specifically for adoptees and DC people, and ensure those records are held in perpetuity;
3. to enact laws based on evidence-based practices so that the rights of the child will be primary; and
4. to establish a knowledge base for NPEs that will allow them to confidently choose behavioral health clinicians.

Key to NPE wellness are increased awareness of the emotional consequences of discovering one’s NPE status, the development of adequate behavioral health strategies, and the availability of providers. Therefore, those are the cornerstones of RTK’s conference objectives. Since the number of NPEs is growing as a result of the increased use of direct-to-consumer DNA testing, the number of people seeking help will grow proportionately, says Deyerin. But there isn’t adequate information about what they should look for in a counselor or what treatment options are available. She and Weiss hope that through these conferences they can create a framework by identifying the information needed and developing connections so NPEs can find professionals to help them through their NPE journeys.

“We want to collect evidence from NPEs about their experiences as well as evidence from clinicians about their treatment options,” says Deyerin. “Then we’ll fold that into some data that can be used for real evidence-based planning rather than just shooting in the dark.”

To further develop awareness about the challenges NPEs face and build resources to assist them, RTK will also network with, and invite to the conferences, individuals from variety of disciplines—such as physicians, psychologists, and social workers—reaching out to them through their professional and credentialing associations.

Beyond the conferences, RTK will also educate NPEs and the public through grassroots outreach on its home turf in Washington, exploring one-on-one opportunities; spreading the word in group settings, for example, making presentations to local groups, genealogy societies, libraries, and medical groups; publishing articles; and creating brochures and other educational materials. Weiss, who excels in networking and developing strong personal relationships, envisions developing “coffee and conversation” meetings. “Maybe I or someone in our group would host in a particular legislative area,” she says. “It could be over lunch in someone’s home or at Starbucks, and we can use it as an opportunity to share with them and update them about what we’re doing.”

The message that weaves throughout all this outreach is that anonymity for sperm donors and parents relinquishing a child for adoption is a thing of the past, that secrets pertaining to NPEs can’t be kept in the closet, that genetic identity is an inviolable right.The second prong of RTK’s mission is to advocate for NPEs and create legislation that establishes and protects their rights. While—thanks to the efforts of adoptee advocates—it’s become well-accepted over time that adoptees should be told about their origins from the start, the need for that same transparency for NPEs and DC offspring is not recognized. Research concerning the mental health of adoptees has demonstrated that secrecy is harmful and has established best practices that need to be extended to NPEs. Therefore, RTK’s goal is to demand rights for NPEs and DC offspring through legislation. Its primary initial goal is to enact a law similar to one recently passed in Texas to combat fertility fraud. Senate Bill 1259—introduced by state Senator Joan Huffman and spearhead by Eve Wiley, who learned that her biological father was her mother’s fertility doctor—makes it a criminal offense for a fertility doctor to use his own sperm to inseminate a patient.

In order to gain traction for the introduction of such a law, RTK must spread awareness about its importance. A lot of people, Deyerin says, are unaware that it’s not illegal for a doctor to use his own sperm to inseminate patients. “When you talk to people who aren’t NPEs about this,” she adds, “their first response is ‘well, duh! Of course that should be illegal. It’s not?’” RTK is now trying to find a legislator in Washington to help introduce this fertility fraud legislation. And Weiss and Deyerin are working with a developer to create an app that identifies users’ legislators and will populate a pre-written but customizable email message with which to reach lawmakers and advocate for change.

Equally important is to introduce legislation to eliminate other types of fertility fraud, such as misrepresentations by fertility clinics and by donors. RTK wants to make sure there are consequences in Washington for those who commit fertility fraud, and branch out from there to push for these laws in other states. Eventually, RTK would like to have chapters in various states advocating for NPE rights throughout the U.S.

Another target for legal challenges concerns birth certificates. Deyerin’s identity crisis led her to think about changing her birth certificate. “I felt that if my kids, grandkids, and great grandkids wanted to see their heritage and know their medical information, having that documentation would be paramount.” But she had no idea how complicated a prospect that is until she began researching. According to Washington’s new Uniform Parentage Act, it may be possible for NPEs to change their birth certificates if all parties involved—the parents on the birth certificate and the biological parents—agree. “It’s a new and tentative thing under the act—a possibility but not necessarily guaranteed,” says Deyerin. On the other hand, the act denies this right to DC individuals, preventing them from ever including their genetic identity on their birth certificates—a prohibition she calls heinous.

“What prompted me [to work to change the law] was looking at the existing laws and realizing, because my birth father is deceased and his family isn’t willing to share information, that I have no rights to my medical information and heritage and no paper trail to create for my descendants to be able to find that information. So I felt that it was time to make a change in those areas.”

“We came together and had an epiphany about working together and seeing if we can get something done in Washington state, Weiss says. “We’ve given ourselves a five-year window, and we’re in it for the long haul. We’re going to keep moving forward and see what we can do.”  There aren’t many people advocating for NPEs and their rights, says Deyerin. “So we both feel it’s a hole that needs to be filled and we want to step in to make sure that—eventually—the next people who learn about their NPE status have tools to go forward and heal themselves.Weiss and Deyerin are starting small but thinking big and aiming high. Their desire, Deyerin concludes, is to set in motion the butterfly effect. “We want to make a strong change locally and have a big effect elsewhere. We’ll start in our area, gain some common best practices, and put those in a structure other chapters can open and use in their own states.” Eventually, she says, “this one snowflake can roll into a giant snowball and we can eventually see change across the United States.”There are a number of ways you can support RTK’s vision. Of course, there’s always a need for funds to support the organization’s initiatives, so donations are welcome. All money goes directly in support of promoting the main goal—ensuring the fundamental right to know one’s genetic identity. In addition, you can write to legislators, meet with lawmakers to educate them about NPE issues, and help in a variety of ways with the upcoming conferences. Visit RTK’s website and select the “Get Involved” menu item. And behavioral health professionals who wish to help the team develop the conference and contribute to data collection about NPE issues should send a message to righttoknowus@gmail.com.