Flawed Eggs: Parents Sue Fertility Clinic Over Children’s Genetic Defect
What can people expect from a clinic in terms of screening for genetic abnormalities?
Australia!: Before diving into the latest assisted reproductive technology (ART) case, I want to congratulate the continent of Australia for their recent leap forward on the issue of marriage equality.
Last week, Australia held a national referendum on same-sex marriage. Every territory had a majority vote in favor of same-sex marriage, with the Australian Capital Territory (like the Washington, D.C. of Australia) voting over 75% in favor.
Of course, not everyone was rejoicing. One straight couple vowed to divorce if same-sex marriage became legal. I don’t fully understand that method of protest, but in any event, an attorney known for his work with the LGBTQ community has offered the couple pro bono legal assistance with their divorce. Nice of him.
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“Fragile X” Syndrome. Back home in America, the New York Court of Appeals recently heard oral argument in the case of two couples, each of which is suing a doctor and the fertility clinic over a genetic defect suffered by each of their children. (FYI, the Court of Appeals is actually New York’s highest state court; their “Supreme Court” is actually the trial court, which you probably remember from Law and Order.)
Both couples in the case had turned to the fertility clinic to use an egg donor. And for both couples, after the birth of their children, they discovered that the children had Fragile X Syndrome. The Syndrome causes intellectual disability, behavioral and learning challenges, and other physical conditions. The gene for the condition was linked, after the fact, to the donated eggs that were matched to the parents. The parents are now seeking damages for the additional expenses of raising a child with the genetic defect and corresponding disabilities.
SOL. At oral argument, the attorney for the doctor and clinic contended that the statute of limitation for malpractice had run. That effectively blocked the parents from any relief, the attorney said.
To be sure, New York’s medical malpractice statute of limitation runs two and half years after the alleged act of malpractice or related treatment. But in this case, that would lead to problematic results. Here, the doctor and the clinic never interacted with the parents after they became pregnant. And the conditions associated with Fragile X Syndrome did not become apparent until well after each of the children were born, and after the statute ran.
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The parents’ attorney argues that it doesn’t make sense that they would be required to file a lawsuit before they could have reasonably known of the malpractice. (Because that would mean that every recipient of donor eggs should sue their clinic before the statute runs, just to be safe.) The clinic’s attorney counters that while this legal framework may be sub-optimal, that’s an issue for the New York legislature, not the courts.
Familiar Territory. This situation may sound familiar, as we’ve seen similar cases arise in the context of gametes provided by a sperm bank. I wrote about one such case last year where one sperm donor boasted a 160 IQ, fluency in 5 languages, and progress toward a Ph.D. in neuroscience. The parents who chose him as a donor, and conceived children using his sperm, were horrified to find that those were lies. The donor was actually a schizophrenic felon college drop-out. The parents brought suit against the sperm bank, but with no success.
What’s The Standard For Not Committing Malpractice? Apart from the issue surrounding a statute of limitations, these cases present fundamental questions as to what are our expectations of sperm and egg banks, as well as fertility clinics and their doctors. Are people entitled to rely on the information provided by the donors who provide their sperm or eggs?
More broadly, what can people expect from a clinic in terms of screening for genetic abnormalities? I spoke with Jennifer Nelson, the owner of an American egg donation agency, about this case. She argued that a fundamental problem with screening gamete donors for genetic diseases is that there are just too many genetic diseases out there. “Take cystic fibrosis for example. There are over 1,700 mutations. Simply put, there is no way to screen for everything.”
Unfortunately, there is no set standard. Companies like Counsyl and Progenity offer family planning panels that screen for up to 200 hereditary disorders. “Many clinics use these (or similar) panels, while some only test the minimum required under the American Society of Reproductive Medicine (ASRM) guidelines. ASRM states that ‘a donor should undergo appropriate genetic evaluation based on history, in accordance with ethnic background and current guidelines. Cystic fibrosis testing should be performed on all donors. Consideration should be given to fragile X testing on donors, but is not required.’” Unless this physician knew the donors had a family history of Fragile X or intellectual disabilities suggestive of Fragile X, not offering this screening may not mean they acted negligently.
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“As an agency owner,” Nelson explained, “the fear of a similar lawsuit keeps me awake at night. We are not the medical professionals and have no control over what testing the clinic may or may not offer. At the end of the day, I do the best I can to act in the best interest of my clients and subsequent children. We connect our recipients with genetic counselors who interview their selected egg donors before she even starts medical screening. Unfortunately, not even ‘our best’ would keep us from the possibility of facing a similar lawsuit down the road. I know I for one will be interested in the outcome this case.”
Striking the right balance is hard. Obviously, donors and clinics want to reduce their legal exposure, and future parents don’t want to have to pay even more to obtain genetic material. It will be interesting to see how courts continue to handle issues like the Fragile X cases.
Ellen Trachman is the Managing Attorney of Trachman Law Center, LLC, a Denver-based law firm specializing in assisted reproductive technology law, adoption, and estate planning. You can reach her at [email protected].
