Woman with brain tumor fights for medical records from sperm donor

Laura High has a brain tumor, but she says it's not her defining characteristic.
High is a stand-up comedian whose routine consists of jokes about being a millennial and living in New York City. High also jokes about being a donor conceived child and looking for her birth father.
"I'm what happens when a woman needs a mother and a man needs $200," High joked during a recent performance in New York City.
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Behind all the giggles, High said she's fighting for concrete measures to protect people conceived by donors and give them access to their medical records.
"It's shocking to learn and find out how many donor conceived people, especially in my age group, who were never told anything and just found out by accident through a DNA test," said High, 34, referring to it people conceived by donors who discover their birth parent only through a DNA test.
PHOTO: Laura High, 34, says being a donor-born child has impacted her everyday life because she doesn't have access to her medical records. High says she developed a hormonal imbalance that led to a brain tumor diagnosis when she was just 13 years old. (Courtesy of Saliyl Dotson)
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High said her parents told her when she was 14 that she was conceived with donor sperm.
Many years later, after getting engaged, she took her own DNA test, fearing the man she loved might be her half brother.
"I live in the same city where my donor donated, so there's a good chance the majority of my siblings probably live in New York City," High said. "I have no idea if my neighbor is a sibling. I have no idea."
High said she found out that she and her fiancé weren't related - but through the DNA test, she found three of her biological siblings.
PHOTO: Laura High sits with her mother as a baby. Her parents were promised a sperm donor who conformed to their religion, like her father a Christian, instead High is half-Jewish. (Courtesy of Laura High)
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All siblings had similar genetic health issues. High's case was diagnosed with a brain tumor in 2016.
Without medical records, High said doctors would not be able to prove it was a genetic issue, but it is suspected that her biological siblings' own medical records are available.
When High found her father, she said he refused to give her and her siblings access to his medical records, which High claims could have helped High get her brain tumor sooner.
High said she and her siblings all have hormonal imbalances, which in her case put them at risk of developing her brain tumor. She said she was diagnosed when she was just 13.
"I'm very fortunate that I caught it in time before I had to have surgery and before I started having children, because the tumor while it's still in my head is essentially rendering me infertile," High said. "It takes a year for it to [get smaller] so thank god I caught it now."
As she continues to undergo treatment, High continues to fight for access to her own medical records and to pave the way for other people conceived by a donor.
PHOTO: "I have no idea if my neighbor is a sibling. I have no idea," High said of her fears that everyone could be a genetic sibling. High and her fiancé took a DNA test to prove they weren't related before they got married. (Courtesy Laura High)
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A bill proposed in High's home state of New York would require donor disclosures of diagnosed medical conditions, family medical conditions, physicians visited, names of schools attended and felony convictions.
The bill, called the Donor Conceived Person Protection Act, would require fertility clinics to give donor-conceived persons access to their updated medical records.
"Not only will it save my life, it will potentially save the lives of my children," High said, adding that people conceived by donors "are just asking for the same knowledge that you would get if you knew your parents." ."
The struggle for donor-designed rights
New York State Senator Patrick Gallivan, a Democrat, is the sponsor of bill, S7602A. He said he believes most people don't know what he described as the lax regulations currently in place in the fertility industry.
"People have the same reaction as me," Gallivan told ABC News. "So far they are completely shocked."
Gallivan explained that state requirements vary, but New York does not require a mental health, physical health or criminal record check to be a donor.
the us The Food and Drug Administration requires sperm donors to be tested within a week of their donation. Donations will be tested for nine STDs, but certain donors could be tested for more, according to a 2020 FDA brochure.
Gallivan's bill would take action against fertility fraud, and a doctor would not use reproductive tissue from a donor unless the recipient consents. Under the bill, if a doctor uses a donation that a client has not consented to use, it would be a crime of grievous bodily harm.
In High's case, she claims the sperm donation her mother received was not the one her mother and father chose. She said she later found out that her biological father was a colleague and friend of her mother's gynecologist.
High has campaigned for Gallivan's bill on TikTok, where she has more than 10 million likes on her platform.
PHOTO: Laura High is a stand-up comedian based in New York City. (Courtesy of Saliyl Dotson)
Gallivan said his bill would help bring structure to fertility practices in New York. For example, it is currently not illegal for a doctor to replace a promised sperm donation with another donation or with the doctor's own sample.
MORE: Man, woman describe how they found out they were half-siblings after alleged fertility scam
The bill would also provide a definition of professional misconduct for physicians, physician assistants and medical assistants. Fertility clinics would need to disclose donor information such as medical records, past crimes, and past doctor visits, according to Gallivan.
The bill would require information to be updated as children grow up and donors find more potential medical problems as they age.
New York State Senator George Borrello, a Republican, co-sponsored the bill and said there was no reason for children conceived by donors to suffer from mental and physical health problems when genetic testing and background checks were widespread.
"If you buy a vehicle, this used car, that has some issues, you have recourse," Borrello said. "You're talking about a person, a life."
Gallivan and Borrello said no one from the fertility industry has contacted their offices directly, but stressed that this area of ​​child protection is one of the few bipartisan efforts that they believe anyone can support.
The bill is currently in the New York Senate Health Committee, where Gallivan and Borrello say they are urging their peers to recognize the need for the bill.
While there are other bills in the US addressing donor anonymity, this is the first proposed law that would give people conceived by a donor direct access to medical records.
ABC News reached out to six New York-area fertility clinics for comment on the bill. Nobody answered.
Richard Vaughn, founder of the International Fertility Law Group, said the New York law was a good start, but that the laws needed to look at the fertility industry as a whole.
"The issue with donor conceived individuals and their right to know is a bit like a love triangle," Vaughn said. He said the children conceived by donors, the donors and the parents all need to be represented, but the bill only deals with child protection.
"I don't think anyone disagrees with the part that it's so important that children conceived by donors have accurate information about their medical history and genetic heritage," Vaughn said. "So the trick is to balance all three and in the middle, you have medical providers."
Vaughn said in his practice that about half of parents tell their children if they were conceived by a donor.
MORE: Ohio family is suing a fertility clinic, claiming daughter has another father after mother's embryo was allegedly fertilized with stranger's sperm
Vaughn said the problem is balancing family health with donor accessibility. He said there was concern that the move to more personal information about donors would result in fewer people giving.
"All donations should be open," Vaughn said. "It's healthy for the children conceived by a donor, it's healthy for the parents to know that you don't really have to hide that."
Susan Crockin, a Georgetown law professor who specializes in fertility ethics, said she believes the New York law could be the start of a national trend.
She said she hopes new legislation doesn't go too far in placing an "impossible burden" on providers to fully screen every donor.
"My biggest hope is that we have laws that are sensible and provide more certainty that donors don't shy away from, but that we give everyone more background and more context for who they are," Crockin added.
Woman with brain cancer fights sperm donor medical records originally appeared on goodmorningamerica.com

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