Episode 6: Creating One Life to Save Another

When Laurie Strongin’s son Henry was born with the rare, often fatal disease of Fanconi anemia, doctors told her that the best way to save his life was with an umbilical cord blood transplant from a genetically matched sibling. But Henry had no matching siblings. Laurie and her husband then got a call from a doctor with a novel idea of combining three technologies to create a child who was guaranteed to be a genetic match, raising the question: is it ethical to create a life in order to save another?

Laurie Strongin

CEO & Founder
Hope for Henry Foundation

Laurie Strongin is founder and CEO of Hope for Henry Foundation, which is reinventing the pediatric patient experience and improving outcomes in hospitals nationwide. Laurie’s work with Hope for Henry and her memoir, “Saving Henry,” have placed her at the forefront of supporting patients’ rights and the responsible use of new medical technologies. Her activism has produced op-eds in national newspapers, appearances on television and radio, collaborations with Congressional leadership, and recognition from the White House. Laurie serves on the board of the National Marrow Donor Program.

Jeffrey Kahn

Andreas C. Dracopolous Director
Johns Hopkins Berman Institute of Bioethics

John E. Wagner, MD

Co-Leader of the Transplantation and Cellular Therapy Program
Professor in the Division of Transplant and Cell Therapy in the Department of Pediatrics
McKnight-Presidential Endowed Chair, Department of Pediatrics, Division of Pediatric Blood and Marrow Transplantation & Cellular Therapy
University of Minnesota

Additional Resources

You can learn more about Fanconi anemia, learn about the latest research, and find resources for those affected by the disease here. You can read more about the Strongin-Goldbergs’ and the Nashes’ stories in this New York Times article from 2001.

Laurie Strongin went on to found the Hope for Henry Foundation, which works with hospitals to help provide support and better care for pediatric patients.

The Greenwall Foundation seeks to make bioethics integral to decisions in health care, policy, and research. Learn more at greenwall.org.

Suggested Readings

Savior Siblings in the United States: Ethical Conundrums, Legal and Regulatory Void, Washington and Lee Journal of Civil Rights and Social Justice, 2018

Savior Siblings in the United States, Petrie Flom Center Bill of Health Blog, 2014

Using Preimplantation Genetic Diagnosis to Create a Stem Cell Donor: Issues, Guidelines & limits, The Journal of Law, Medicine & Ethics, 2003

Savior Siblings and Cloning, Ethical, Legal and Societal Implications of Biotechnology, James Madison University

Creating a Stem Cell Donor: A Case Study in Reproductive Genetics, Kennedy Institute of Ethics Journal, 2004

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