Home DNA Tests Have Stripped Anonymity From Donor Conception, With Huge Implications For The Industry

Home DNA Tests Have Stripped Anonymity From Donor Conception, With Huge Implications For The Industry

Cassandra Adams, a housewife, artist and attorney from New Jersey, is always eager to learn more about her legacy. "I've loved genealogy since I was a kid and always ask questions about our family's history, culture and language," says Adams. "I am a family historian – Italian grandfather took me aside to tell all the stories."

When he did a DNA test at home as part of a volunteer study in 2017, he was surprised by the unexpected results. The father's signature mix of British, Dutch and French results in half Italian on the mother's side, as expected, but also half Ashkenazi Jew. That day, he confronted his mother and learned that she was conceived through anonymous sperm donation.

Her world has changed forever.

"Thanks to my DNA match and my mother's guidance, I was able to quickly locate my real father, even though he is anonymous and has no records," says his Right to Know story. This organization supports those affected by the surprising DNA discovery. genetic identity issues and discordant parenting experiences.

Adams suddenly found himself an advocate for MPE (faulty parenting experiences), NPE (non-parental expectations) and the donor community. She hosts online donor groups and supports organizations such as the American Donor Council, Right to Know, Bright Hope and Cure, and others.

"It found my way," he said of his request. “I spent a lot of time working on my discoveries with people in online support groups, writing a lot and trying to explain what was happening to me to people who didn't understand.

"After that, people seemed to agree with what I wrote and I started to discover the healing element in helping others, supporting what we need as donor-born people – especially belated discoveries – and learning how to partially change grief and grief. I'm traumatized into something tangible that can help other people," Adams said. He says.

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Donor designs reach mainstream media

Adapted from the hit Netflix documentary, which tells the true story of a fertility doctor who uses his own sperm to impregnate female patients, CNN's special report on donor insemination contributed to The Baby Business news report.

The anonymity of egg or sperm donors has been guaranteed for decades. But with the accessibility of DNA testing at home, anonymity was impossible for many years.

"Many people don't realize how unregulated the fertility industry is, and fraud, error, and negligence happen more often than you might think," said Cara Rubinstein Deyerin, CEO of Right to Know.

"Donor Fraud to Pursue Fertility Fraud Cases." Your nail salon has additional rules. We make people; One case of fraud is one case too. It's a business and the nature of business is always to increase profits," he said.

"According to the Future Market Research Report, the global maternity services market will reach $36 billion next year," he said. "The focus is on the parents' intention to have a child, but not the effect on the child. Our understanding of the impact of assisted reproduction on our father's children is increasing and there will be steps towards transparency and stricter regulations.

Rubinstein Deyerin points out that the change is gradual. As the fertility industry focuses on anonymity, children conceived are now adults, and media across the country are asking, "What rights should donors know?" They ask tough questions, including:

"Anonymity no longer exists," said Rubinstein Deyerin. "People with MPE (experience of parenting a disabled child) often have three goals in terms of their genetic family. First, take a proper medical history. Not knowing half of your medical history has life and death consequences.

"The second is to understand who they are and where they come from… I hope anyone facing a DNA emergency will at least take the time to help with these two goals." "But if you look at your gamete data when you have children, you at least owe them a favor by giving them that information," he said.

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Rubinstein Deyerin added, "Some people may want to connect with their new genetic family. That should be a concern for everyone." But the best advice here is to take things slow.

Read : 23 And I Opened Pandora's Family Medical Secret Box: 'Hard to Know, Even Worse Unknown'

said Wendy Kramer, director and co-founder of the Donor Sibling Registry, a global registry with a mission to connect, educate and empower all members of the donor family.

The 501(c)3 nonprofit organization facilitates mutual understanding between donors, recipients, and descendants so they can share important medical information and explore new relationships.

To highlight some of the industry's concerns, Kramer refers to the article "10 Things Your Doctor, Clinic, or Sperm Bank Won't Tell You." The key points of this study include:

  • Lack of education and transparency for people who donate genetic material
  • Lack of diagnosis for medical problems
  • No data checked
  • The donor's intrinsic desire to know their genetic parents
  • The dangers of keeping secrets include:

Kramer's work in distributor design is personal. "I'm married and my husband is barren," she said. "My donor son [Ryan] wanted to know if he had any half-siblings and if his biological father would be open to a relationship."

"Sperm banks and clinics didn't help at all, so we took matters into our own hands," Kramer said. "Since I gave birth to my son under these circumstances, I've always felt it was my responsibility to help him find answers to his questions about his background, medical history and genetics."

Since its founding in 2000, the Donor Sibling Registry has helped connect more than 23,000 of its 81,000 members with first- and second-degree genetic relatives. Wendy's son, Ryan Kramer, co-founded the company with him.

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Test on adjustment

"The fertility industry in the United States wants regulation to bring us in line with the rest of the world," said Rubinstein Deyerin. "Technology often develops faster than law."

To understand the unregulated industry, many organizations and lawmakers introduce laws that create impact. For example, at the national level, a recently passed federal law requires sperm and egg donors to provide mandatory medical information.

A law in Colorado will end anonymous sperm and egg donation by 2025. A similar bill is underway in New York. While the rules are a step in the right direction, experts and advocates of donor-designed spaces agree that there is still a long way to go.

"The future of donor conception should be like that of celebrity donors," Adams said. "They want to be included, they want to be known, they want to be recognized by the family. Expanding the definition of family is a very progressive thing.

"The person the donor conceived never replaced them, and their place was never given to anyone who helped create them," Adams continued. "In this case, the person does not have the autonomy and power to make their own decisions about how to express their relationship. Individuals conceived by donors must not intentionally separate themselves from their culture."

For those who are just learning that they were conceived through a donor, or who have had smooth parenting experience, there are resources that can help.

Michelle Talsma Everson is a writer and editor in Phoenix. She has written for various media and believes in the power of storytelling to shed light on important issues that affect people's lives. You can view his work at mteverson.com .

This article is from NextAvenue.org , © 2022 Twin Cities Public Television, Inc. Reproduced with permission. all copyright.

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