Family sues SC group after daughter’s ovaries were taken for research without their consent

The family of a young woman who died in a car wreck are suing the organization that harvests from organ donors in South Carolina over accusations the group misused their daughter’s ovaries.

Karsyn von Egidy was 27 years old when she was involved in a fatal car accident in Sumter on April 15, 2023. She was airlifted to Prisma Health Richland Hospital in Columbia, where she died from her injuries after five days in a coma in intensive care.

According to the lawsuit, representatives of We Are Sharing Hope, South Carolina’s designated organ procurement organization, approached the von Egidy family at the hospital to secure an organ donation. Von Egidy was a registered organ donor in her native North Carolina.

Her mother, Traci von Egidy, filled out an authorization form, saying the family wanted Karsyn’s organs to go into living recipients but not for “research, medical therapy, and/or education,” citing “deeply held religious, moral, and ethical beliefs,” according to the suit.

Without the family’s knowledge, records show that Karsyn’s ovaries were removed along with her other organs, the suit says. The authorization form did not mention reproductive organs, and under “other” the family wrote “N/A.”

A couple weeks later, the von Egidys received a letter from Sharing Hope detailing where her organs were sent, including that her “ovaries were recovered and sent to medical research,” the letter said. The letter left the family feeling as if “their wishes had been utterly disregarded,” the lawsuit says.

They asked for a copy of the authorization form and said the Sharing Hope representative had written on the form that the “family consents to research except for the heart,” which “expressly contradicted their wishes for Karsyn’s organs and are false statements,” they said.

Sharing Hope CEO Dave DeStefano later wrote to the family that “In North Carolina, donor registration does not automatically include donation for research purposes. In contrast, South Carolina donor registration do include donations for research purposes,” and that the representative initially assumed that research was covered by the release.

The letter also said that “Ovary tissue was used but no eggs were recovered, and no ovary tissue remains,” while the initial letter said that no tissue had been removed, the lawsuit said.

The lawsuit accuses Sharing Hope of fraudulent conduct and gross negligence that compounded the family’s pain and suffering. They are seeking punitive damages.

The suit is brought by attorneys Jacob Kea of Nelson Mullins and Brian Barnwell of Rikard & Protopapas.

In their response to the complaint, Sharing Hope denies the authorization form constitutes a legally enforceable contract and says that organ donations are considered a gift. The organization also denies altering the authorization form and says it acted in good faith.

The organization also denies that the von Edigys have standing to sue, as they suffered no injury from the donation and the group had no legal duty toward them. Sharing Hope maintains that Karsyn’s organs were taken in accordance with the law and medical standards. The motion filed by attorneys Jean Marie Jennings and Molly Craig of the Hood Law Firm seeks to have the suit dismissed.

“We Are Sharing Hope follows the standard of care expected and required in accordance with the organ donation practice and process,” the organization said in a statement to The State. “We care deeply for our donor heroes and their families and always strive to be good stewards of these precious gifts.”

The State has reached out to attorneys on both sides of the lawsuit seeking further comment.