Born for a Noble Cause - A case study on Fanconi Anemia

Oct 15, 2026

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The case study reframes designer-baby ethics through a fictional narrative rooted in multiple real cases. College bioethics students draft the scenario, while nursing majors from an introductory general biology course guide and perform the associated activities. The story follows decision-making required to save a child with Fanconi Anemia by creating a genetically compatible sibling using IVF and preimplantation genetic diagnosis, highlighting technological steps, stress, and ethical considerations.

LanguageEnglish

CategoryHealthcare

FormatPDF

Pages8

Reading Time20 min

AccessFree to download

Abstract

My Story

The Technology Behind the Story

Born for a Noble Cause? -- -A case study on Fanconi Anemia Nancy L. Elwess, Savanna R. Butterfield, Amanda Charles, Maxine C. DeVeaugh, Gloria J. Lu, Hira Shafqat, and Andrew Watts Department of Biological Sciences Plattsburgh State University 101 Broad Street Plattsburgh, NY 12901 [E-mail: nancy.elwess@plattsburgh.edu](E-mail: nancy.elwess@plattsburgh.edu) Abstract: The fictional case study presented here is not based on one case, but is actually based on several cases. College students enrolled in a bioethics course for non-majors wrote it. The case entails the thought processes and decision-making involved in order to save one child suffering from a genetic disorder by producing another child, a “designer baby.” Nursing majors from a freshmen level college General Biology course participated in the suggested activities. Keywords: Fanconi Anemia, bioethics, in-vitro fertilization, preimplantation genetic diagnosis MY STORY The day I was born I had the potential to save my brother's life. My name is Gene. I am a designer baby. I was designed, created, and born for the specific purpose of saving his life. My brother was diagnosed with Fanconi Anemia (FA), an illness that is fatal unless a successful bone marrow transplant can be performed. My parents first thought was that they would be more than happy to donate marrow to their child, but neither of them was a match nor was any other member of their extended family. It was around this time that their doctor suggested having another child who could be a donor. Having a basic knowledge of biology, my parents knew that the odds of a new child being a match was 25% along with a 25% chance of the new child also having Fanconi Anemia. These did not seem like very good odds to them, so they sought out a doctor who could ensure that the new baby would be a genetic match and would not have the disease. This doctor was a specialist in the area of in-vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) . IVF is the creation of an embryo in a lab using donated sperm and eggs. PGD is the testing of early embryos for specific traits prior to implantation inside themother. This process allows parents to create babies screened for specific traits. In my specific case, my parents designed me to be a match for my brother and to not possess the gene for FA. This would guarantee that I would be born healthy and that I would be a genetic match for my brother so that I could donate bone marrow which could be used to save his life. Now that my parents knew they could create a child to save the one they already had, they had to decide if they should and also if they would. They were in an extremely emotional state at the time. They had to deal with this decision, while also coping with my brother's illness. They were under an extreme amount of stress at the time and facing avery difficult decision. They had to consider whether or not it was right to create a new child to save their firstborn. They had to face the prospect of raising another child, paying for the expensive procedure to create him, and of the reaction of their friends and families regarding whatever decision they made. It was a very difficult decision for them. They agonized over it. They consulted with doctors, lawyers, clergy, friends, and family. After learning all that they could and weighing the consequences of either decision they made the only decision they really could, to save the life of their child. This is where I come in. Having decided that they wanted to go ahead with having me, they needed to design me. They wanted to ensure that I would be a match for my brother and that I would not have FA. They accomplished both of these goals through the use of PGD. The embryo that would eventually become me was implanted into my mother and nine months later I was born. After my birth, bone marrow was harvested from my hip. This bone marrow was transplanted into my brother. This healthy

FAQs

What decision does the fictional case center on?

Parents decide whether to create a new child who can be genetically matched to save their firstborn suffering from Fanconi Anemia through IVF and PGD.

What are IVF and PGD in the case’s description?

IVF creates embryos in a lab using eggs and sperm, while PGD tests early embryos for specific genetic traits before implantation.

How does the technology timeline relate to producing a designer baby?

After egg retrieval and fertilization, embryos can undergo PGD, then be placed in the uterus; a later step includes bone marrow harvesting and transplantation to the affected sibling.

Oct 15, 2026

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