‘There’s no such thing as anonymity’: With consumer DNA tests, sperm banks reconsider long-held promises to donors

8 de outubro de 2019

MOLLY FERGUSON FOR STAT.

For generations, it was a basic tenet of donating sperm: Clinics could forever protect their clients’ identities.

But, increasingly, donor anonymity is dead.

The rise of consumer genetic tests — which allow people to connect with relatives they never knew they had, including some who never intended to be found in the first place — is forcing sperm donation clinics to confront the fact that it is now virtually impossible to guarantee anonymity to their clients. Instead, sites like 23andMe and Ancestry.com are giving customers the genetic clues they need to identify biological parents on their own.

That, clinics and outside experts say, has forced a reckoning for the industry. Many clinics say they have revised their policies — not to eliminate “anonymous” donations, but to make clear that the term only means they will not share donor information. Others are gravitating toward “open ID” donor systems, in which donors are told that offspring could connect with them when they turn 18 — or sooner — if both parties agree to it.

And in at least one case, a clinic has sought to draw a line in the sand, ordering a woman to cease and desist efforts to contact a long-ago donor she had identified after using 23andMe.

“There’s no doubt that it’s easier to recruit a potential sperm donor if you tell him he can be anonymous,” said Fredrik Andreasson, a top executive at Seattle Sperm Bank, which has revised its own contracts. “But there’s no such thing as anonymity.”

Donor anonymity is also an issue for egg donors, but less so. Eggs harvested from women are typically done in a more open manner, with recipients given identifying information about the donors from the outset, or when the child turns 18.

The concept of anonymity has been hammered into the model of sperm donation since its inception. The first recorded instance of artificial insemination with donor sperm occurred in 1884; the woman was never even told that another man’s semen was used. The fear, apparently, was psychological — it was believed this might cause “irreparable harm” to the marriage and to the child.

Infertility carried a stigma for many years, and still does today, particularly among men — even though they contribute to about half of the infertility cases in the world. As a result, sperm donation was shrouded in secrecy, even looked upon with shame, for nearly a century.

Beginning in the 1980s, with improvements in fertility treatments, those attitudes started to change. The demographic makeup of sperm bank customers has also become more diverse, including single women and lesbian couples who have encouraged more open conversations with children about their conception.

“I think with the increased visibility and acceptance of different kinds of families, the demographic that uses donor sperm has changed as well,” said Robin Baird, chief legal counsel at Columbus, Ohio-based sperm bank Cryobio. “It’s made us a lot more open.”

Still, anonymous donations have been a mainstay of the industry.

There are few reliable figures on the sperm banking industry and the percentage of donations that are made anonymously. Researchers find it difficult to track how many men have donated semen, how many children have resulted from each individual’s donation, and how much money is spent on procuring and purveying sperm.

There are about two dozen sperm banks in the United States; each operates independently and with minimal government oversight. Some of them are crafting new policies on anonymity, Andreasson said, while others remain “stuck in the past.”

Last Christmas, Danielle Teuscher, a mother in Portland, Ore., signed her whole family up for 23andMe. They’d seen the commercials, and were curious to learn about the family’s origins — particularly her daughter Zoe’s.

Zoe had been conceived about six years ago, using gametes that had been purchased from Northwest Cryobank, based in the area.

When Teuscher checked out her daughter’s test results, she was shocked: 23andMe had connected her to the mother of her daughter’s biological father.

Feeling a burst of excitement, she sent a message to the woman asking if she would be open to contact.

She got a curt response. Then, two weeks later, Teuscher received a cease-and-desist letter from Northwest Cryobank — and the threat of a potential $20,000 fee. The letter called Teuscher’s actions a “flagrant violation” of her contract, which stated that she make no effort to search for or contact the donor.

It also revoked her access to five additional vials of the same donor’s sperm. Teuscher, 31, had already purchased them in the hopes of giving Zoe a sibling. After Teuscher reached out to the donor’s mother via 23andMe, the cryobank changed the designation to anonymous, and removed it from circulation. (The donation had been made under the “open ID” system, but the donor never agreed to contact.)

“I was just devastated, and felt so alone. I didn’t realize they considered what I did some god-awful thing,” said Teuscher, who said she had never been counseled verbally about the specifics of donor confidentiality.

She is now suing Northwest Cryobank for withholding gametes that she legally purchased and seeking damages.

The clinic declined to discuss the case specifically. But a spokesman said any uninvited outreach by clients to donors who believed they had been anonymous could be disruptive to the donor’s family for any number of reasons. Donors, for instance, may have kept their decisions private from other relatives, who could be contacted by donors through 23andMe or other such services.

“I think it’s a very selfish act to try and locate an unknown donor,” said the spokesman, Scott Brown. “Particularly when he’s graciously and selflessly helped you get the greatest gift in the world: Your child.”

If a donor gets spooked, he said, because someone reaches out to him through a DNA testing service, it can impact his relationship with the rest of his progeny.

“A lot is at stake when people go on their own,” Brown said.

It’s very difficult to become a sperm donor.

Cryobanks tend to accept only about 1% of applicants, after screening for issues like medical history, disease genes, education, even height and hair color. (Donors who are carriers of certain diseases aren’t automatically turned away — but patients are generally counseled to take the same carrier screenings before accepting any donor vials.)

For many donors, especially those who worked with cryobanks more than a decade ago, the promise of anonymity has carried great weight. They were typically in college, or in graduate school, when they donated sperm. Few could predict how quickly consumer DNA testing would proliferate around the globe — or the implications for their later lives.

“Nobody could have anticipated 15 years ago that somebody could find out — because one of their cousins took a 23andMe test — that they’re the offspring of some sperm donor in, say, Seattle,” said Dr. Peter McGovern, a professor of reproductive endocrinology and infertility at Rutgers New Jersey Medical School.

Anonymity has also made it easier for clinics to find willing donors, at least in the United States. Anonymous donations are no longer legal in several countries — including Australia, New Zealand, and the United Kingdom — and in those countries there is often a dearth of willing donors, and a shortage of supply.

In a 2016 study conducted by I. Glenn Cohen, a professor of bioethics at Harvard Law School, about 29 percent of potential sperm donors said they would refuse donating if their names were put on a registry. The study suggested that prohibiting anonymous sperm donations would lead to a decline in the number of donors and that those who were willing to be identified would likely demand more compensation.

Indeed, many sperm banks already have a different pricing structure for so-called anonymous sperm and open ID sperm. The latter tends to be more expensive: It’s more time-consuming, after all, to find donors who are willing to be contacted by their potential progeny.

As DNA testing services proliferate, and as “people realize how anonymity truly is an illusion now, we could see donor rates drop,” said Dr. Sriram Eleswarapu, a urologist who researchers male infertility at the University of California, Los Angeles.

For donors who are willing to be identified, open ID systems can be an appealing option. And some say there’s a mutual benefit to the approach.

“I know that people can get very curious about their ancestry, especially when a link is unknown, so I don’t want to deny the children the option to find out,” one donor told STAT, speaking on condition of anonymity. “I’m also just plain curious to see what has come of this little endeavor. I consider it a time capsule of sorts, one that might open just in time for a midlife crisis.”

He said that since the contract explicitly states that he’s not legally the father, and have no rights or obligations towards the offspring, he doesn’t feel threatened by the possibility he could be contacted by his progeny at age 18.

In a 2017 study, researchers at the University of California, Davis, estimated that about 10% of sperm donor programs had an open ID program. In 2006, that rate jumped to one in three programs. In 2015 it was over 50%.

Joanna Scheib, a professor of psychology at UC Davis, who researches the psychosocial issues related to reproductive technologies, said she expects that figure will grow.

“There’s been a slow realization among sperm banks that this generation of children is very tech-savvy: If they want to know who their donor is, they’ll find out,” Scheib said. “You have to have your head in the sand if you don’t think information is becoming more and more available.”

Some ethicists and others balk at the idea of donor anonymity in the first place, saying it denies progeny the opportunity to understand issues that are critical to the formation of their own identities.

“There are ethical questions about why a sperm bank in the first place would want to encourage a parent to lie to their child,” said Debbie Kennett, a genealogist based in the United Kingdom who has spoken extensively about donor anonymity.

Wendy Kramer used donor sperm from California Cryobank to conceive her son, Ryan. In 2005, he was the first person to independently contact his biological father, relying largely on internet search tools to narrow down the possibilities. He found out and made contact, and has since built up a friendly relationship with the donor — and has met several of his half-siblings as well.

Wendy and Ryan now run the Donor Sibling Registry, a Colorado-based organization that helps donor-conceived half-siblings to connect. In her years working with donor-conceived children and their families, Wendy Kramer has become disillusioned by the workings of sperm banks. She thinks that anonymous donations are a fallacy, and can be more harmful than helpful — to both families, and the donors who helped them.

“My donor was promised no more than 10 children, and we just hit 20 last week,” Kramer said. “Donors are beginning to see they were lied to.”

Kramer emphasized that the psychological consequences of children not knowing their biological origins can be scarring. Donor anonymity, she said, just perpetuates the stigma that’s already associated with infertility — and sperm banks should move past those “empty promises.”

“It’s not like they’re creating widgets in a factory … this is an industry creating human beings, so you’d think there would be more accountability and ethics,” Kramer said. “The lack of regulation and the lack of oversight has had real ramifications.”

An earlier version of this story incorrectly stated that Danielle Teuscher had purchased four vials of gametes. She purchased five.

 

 

Extraído de: Stat News.


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