Sarah Gray And Arupa Ganguly On Remembering The Human Lives Behind Biospecimen Donations

March 28, 2019

By Melissa Pandika

March 28, 2019 | In a moving opening plenary address at the 26th annual Molecular Medicine Tri-Conference, Sarah Gray, an author and donation advocate in Washington, D.C., and Arupa Ganguly, a professor of genetics at the University of Pennsylvania’s Perelman School of Medicine, highlighted the importance of remembering the human side of biomedical research, specifically the biospecimen donors instrumental to driving potentially life-saving discoveries. 

In her Washington Post-bestselling memoir, A Life Everlasting: The Extraordinary Story of One Boy’s Gift to Medical Science, Gray tells the story of how she donated her newborn son’s tissues after he died of anencephaly—a condition that prevents proper development of the brain and skull—and her quest to locate each donation. Her search for her son’s retinas led her to Ganguly, whose laboratory researches retinoblastoma, a rare cancer that arises from immature retinal cells and primarily affects young children. Gray and Ganguly shared their experience at San Francisco’s Moscone South Convention Center on March 11. 

Gray opened with a photo of herself from 2009, smiling and pregnant with identical twins. She then displayed ultrasound images, which showed one twin with a round skull—and the other with a bumpy skull, indicating anencephaly. Babies with the condition typically die in utero or within a few hours to days of birth. “My husband and I were devastated,” Gray said. She asked about donating the affected twin’s body to science, but her doctor was unsure of how to do so. 

Gray contacted the Washington Regional Transplant Community (WRTC), who said her son’s organs might be too small for transplantation but could be used in research. “Even though our son’s death would be inevitable, I thought maybe it could be productive,” she said. “Maybe it would find a cure for somebody else.” On March 23, 2010, she gave birth to Callum and Thomas, who had anencephaly. Thomas lived for six days. 

The Children’s National Medical Center in Washington, D.C. recovered Thomas’ eyes and liver for research. Gray and her husband began attending grief counseling sessions through WRTC with bereaved individuals whose loved ones had donated their organs for transplantation; some had already gotten letters from the transplant recipients. Gray was impressed by the immediate difference the donations had made. When her turn came, she talked about donating Thomas’ tissues to research. “I don’t know if he’s helped someone, of if he ever will,” she said. 

Afterward, someone reassured her that research is important, too and that she would never know how many lives her son’s donation had impacted—but not knowing only made Gray feel worse. She asked WRTC if she could contact the researcher working with her son’s tissues. Since WRTC only facilitated letter writing between transplant recipients and families, it connected her with the National Disease Research Interchange (NDRI), an organization that allows scientists to request biospecimens. She received access to the NDRI website and asked if she could write to the researcher who had procured Thomas’ retinas. Although donor families had never contacted researchers through NRDI, the organization supported Gray. In September 2014, she emailed Ganguly, asking to visit her lab one day. “It was a Hail Mary pass,” she said. 

Ganguly then took to the stage, describing how she and her team study family trees tracking the inheritance of diseases, including retinoblastoma, which often results in lost eyesight, especially in developing countries. To determine how to better target retinoblastoma, they need to compare normal retinas from healthy children as controls with retinas from children with retinoblastoma. In 2007, Ganguly had asked NDRI about obtaining a normal retina sample from fetal or young children. NRDI responded that it didn’t receive many retinas from younger children but would relay her request to eye banks around the country. Ganguly described her thinking at the time as “absurd”; after all, why would a young, healthy child die? 

On March 30, 2010, she and her team received a normal retina sample through the NRDI protocol. They labeled it Res 360, isolated its RNA and transferred it for storage in their freezer. Then, in September 2014, Ganguly received an email notifying her that the donor’s mother wanted to get in touch with her. “I froze,” she told the audience. Now, Res 360 had become connected to a person. 

She began grappling with thorny ethical questions. “This meant some young mother lost her young child—and was I waiting for it to happen?” The university told her she could contact Gray directly, explain to how she had used the sample and meet with her, if she wanted. In her email to Gray, Ganguly explained the rationale behind obtaining a normal retina from a young child and expressed gratitude for the sample. Over the phone, Gray told Ganguly she was grateful she had found some use for the sample. At that moment, Ganguly realized a visit to her lab would bring Gray closure. 

Ganguly then shared photos of Gray’s visit in March 2015, including one showing Gray giving her a photo of Thomas, which still hangs in her office. She also described Gray seeing a frozen sample of RNA from Thomas’ retina. “I could clearly see that I brought her back whole circle,” Ganguly said. 

But Gray’s visit provided Ganguly with closure, too. When Ganguly expressed guilt over wanting a child to die so she could obtain a healthy retina sample, Gray comforted her. “She told me, ‘Arupa, you should not feel bad. If you didn’t use the retina, it would be buried and have no use.’ It was a very profound statement.’” The two women remain friends, and The Philadelphia Inquirer, the Associated Press, Radiolab and other major media outlets have covered their story. 

Returning to the stage, Gray said the donation of Thomas’ tissues imbued his life with “an extra layer of meaning.” “It made me see he is relevant in this community. He’s not just a source of sadness. He is a source of pride.”  Thomas’ donations also made Ganguly a part of her family’s story. To this day, she and her family visit Ganguly’s lab every year around the holidays. 

Ganguly concluded by describing the lasting impact of the Gray family on her and her lab members. “We have become ambassadors for science,” she said. “We discuss what we do so that people understand that research is not just some black box and that contributing samples to research can be meaningful. It’s not always about transplants.”