New Legislation Would Honor Local Youth and Protect Future Donor Conceived FamiliesFree Access

In May of 2020, Laura and Dave Gunner received the worst news parents can get: their son, Steven, had died of an accidental opioid overdose. He was 27. While the Gunners were devastated, as you can imagine, they had little idea that more heartbreak was on the way.

After Steven’s death, the Gunners activated an account at the Donor Sibling Registry, a non-profit that connects sperm and egg donors with donor-conceived individuals and families. Since Steven was conceived with donated sperm from Fairfax Cryobank’s donor 1558 and his mother’s egg, they hoped they might catch a glimpse of him in some of his donor siblings. They also felt an obligation to inform other parents and donor siblings that Steven, whom they loved with all their heart, had suffered from schizophrenia. As such, he was prone to addictions and erratic behavior and had been hospitalized on numerous occasions for mental health emergencies. 

At this point, 18 months ago, they had no reason to believe a connection existed between the donor and Steven’s schizophrenia; in fact, after initial attempts, they let the matter lie dormant. Fairfax, after all, the multi-million dollar fertility enterprise, screens its donors for several genetic conditions and health-related problems. Each donor is asked to fill out questionnaires. There was nothing to worry about, right? This is where the trouble starts: Answers about health history are supplied by the donors on the honor system and are accepted at face value without verification. So when 1558 answered, “No,” to the question, “Have you ever been hospitalized for anything other than surgery?” and, “No,” to the question, “Have you ever had psychiatric care?” there was no attempt to verify his answer. In this instance, both “no” answers turned out to be false.

The Gunners, Holland High School sweethearts now living in East Aurora where Dave is the Town of Aurora highway superintendent, had known they were not able to conceive a child in the conventional manner even before their wedding 30 years ago. So they spent a long time consulting with Laura’s doctors and researching providers.  After receiving assurances that the procedure was safe and that Fairfax was a reputable company, the Gunners completed their due diligence by poring over profiles of potential donors. They settled on Fairfax’s number 1558 to start their family, who was described as an outgoing, athletic, an all-American college kid. According to the data available to the Gunners, he was completely healthy. Steven was born in January of 1993.

Steven led a normal childhood; he was kind, outgoing, intelligent, his dad’s buddy, his mother’s little boy. In his teenage years, however, his mood became sullen; his behavior more unpredictable. Where once he had been captain of his junior varsity football team, at 15 he quit, attracted more by marijuana, hallucinogenic drugs and fringe groups with unusual belief systems and rituals.

The Gunners gave Steven all the support two loving parents could give—counseling, medical attention, rehab, tough love, total love—spending thousands on doctors and lawyers. Since, supposedly, there was no history of mental illness in his biological relatives, professional opinion was that his behavioral problems could be traced to his drug use. Nevertheless, the Gunners loved him unconditionally, and those who remember him recall a bright, generous, sensitive, humorous young man, who, sadly, was plagued by struggles with mental health.

At age 19, Steven was finally, albeit much too late, diagnosed as schizophrenic.

Six months ago, a year after Steven’s death, a whirlwind kicked up. The Donor Sibling Registry helped put Laura in touch with other mothers of children from donor 1558, the youngest of whom is 14. So far she has identified 18. The mother lode, so to speak, came when DNA searches and the community of the donors, offspring and families put her in touch with 1558’s mother. 

“If you would like to know more about my son’s medical record, contact me,” she wrote in an email. “There is more you should know.”

A torrent of emails followed, detailing 1558’s troubled childhood, which had been fraught with behavioral issues beginning in early childhood and included intervention by medical and psychiatric personnel. What 1558 had not disclosed to Fairfax, most importantly, was his hospitalization for schizophrenia a few years before his sperm donation. While the causes and transmission of schizophrenia are far from fully understood, schizophrenia in a parent can give a child a statistically greater chance of developing the condition. There are strong similarities between Steven and 1558. Like Steven, 1558, too, died of an opioid overdose, when he was 47-years-old. Like Steven, 1558 joined strange cult-like worship groups, often centered around psychedelics. Both of them had impulsively traveled to California with no place to stay and no plan.

“The grieving started all over again,” Laura said. “What if 1558’s profile had included the information about the hospitalization for schizophrenia?” 

Worst of all, Fairfax broke no laws since so much of the fertility industry is self-regulated. Fairfax will tell you how proud they are of their geneticists and the care they take to produce a good product. They test for some conditions, like HIV and hepatitis, cystic fibrosis and Tay-Sachs disease. But as for any further regulation of the multi-billion dollar fertility industry, Fairfax and its lobby group, the American Society for Reproductive Medicine, aren’t interested. They cite the inherent uncertainty in the birth process. 

Furthermore, they cite a possible cost increase as a result of regulation. The Gunners scoff at that. “We’re talking about creating a human life; a few more dollars spent on transparency won’t make any difference.

“We wanted Fairfax to be helpful in bringing this news about Steven to light. We wanted Fairfax’s help in notifying families of 1558’s donor siblings. If they had done that, we probably would never have come forward,” Dave said. Besides, the statute of limitations is 18 months, which after gestation, meant parents needed to present a claim against Fairfax before their child turned 10 months old.

“It was as if Steven had died all over again,” Laura said.

The Gunners went back to work, first getting an okay from daughter Sydney, a [future Smith College, class of 2026] student. “If she had asked us not to go forward, we would have honored her wishes and buried the whole thing,” Dave Gunner said. “With her okay, we decided to go for it.” Receiving legal advice from local attorney Tony DiFilippo and other legal specialists, they learned that the best remedy for the situation was a change in the law. Working with State Senator Patrick Gallivan, they inspired Senate Bill S.7602, the Donor Conceived Person Protection Act, which is now in the Health Committee in Albany. Through the act, they want to give donors the opportunity to sign a HIPAA release form making their medical records available during the process of connecting a donor and recipient. They simply want to make the process more transparent. “It’s really common sense,” Dave said.

“We’re even willing to recommend that donors who don’t have access to their medical history still be allowed to donate,” Laura said, “as long as that omission is noted in on the donor profile. Then the intended parents can make their own determination.”

The Gunner’s were interviewed by Wall Street Journal writer Amy Dockser Marcus, who produced a national story. 

They are currently trying to gather necessary support across New York State for the bill, which Gallivan describes this way: “Bill (S.7602) is the ‘Donor-Conceived Person Protection Act.’ It would protect recipients by requiring verification of a donor’s medical history, along with information about the donor’s educational background and criminal record.  This information is self-reported by the donor and never confirmed.” He has also introduced a companion bill, S.7569 that, “Would make it a crime to commit so-called fertility fraud. It would hold reproductive tissue banks, fertility clinics and others accountable for providing false or erroneous information about a donor.”

Gallivan has received support, so far, from Erie County Executive Mark Polancarz, Rep. Chris Jacobs and several colleagues in the legislature. The Gunners say that the encouragement they’ve received from the community has been heartwarming as they’ve continued to grieve for their son while advocating for the legislation. Certainly, they have their opponents. The social media vitriol machine has targeted Laura with unspeakably cruel comments, but overall, they are encouraged by their friends and neighbors.  

The days ahead will be busy, because the campaign needs to succeed across the state and on the floor in Albany. 

“We decided that if we were going to go public, we would go all-in. So many people out there know only half of their health history; it’s a tragedy.” That means getting the word out to legislators of both parties across the state and encouraging everyone to contact their state senators and assemblymen. 

“Start with Sen. Gallivan (gallivan@nysenate.gov) and email all members of the Senate Health Committee using the same email protocol: Senators Grivera, Biaggi, Brouk, Hoylman, Kaminsky, May, Oberacker, Rath, Ryan, Salazar, Stec and Thomas.”

We spoke for quite a while last week; Laura, Dave and I. Steven had been in several sessions of my writing class, years ago. The Gunners knew that I could relate when they asked that Steven be remembered as the kind, inquisitive, intelligent young man with a sense of humor, and not the troubled young man who battled psychoses as he struggled to find his way in a world ill-equipped to accommodate those with psychological issues. Since I have been acquainted with the Gunners for years, they hoped that I could be trusted to portray them as they are: grieving parents who did everything to get Steven on an independent path even as he confronted schizophrenia, and grieving parents who want to save other parents from a similar grieving. They are Steven’s parents, but citizens of their community, too, for whom mental health has become a priority. As incoming Erie County Sheriff John Garcia takes office, he has asked Laura Gunner to be on his new Mental Health Advisory Panel.

“If we had known about the schizophrenia, we might have had an earlier diagnosis and earlier treatment,” Laura said. “Each time he lapsed into psychosis, it was more difficult for him to emerge from its grasp. I wish we could have saved him some of the suffering.”

For information about Sen. Gallivan’s proposed legislation, visit the NY Senate’s Website here. 

The Wall Street Journal story about the Gunner’s can be read at their website, WSJ.Com.