Books! The ethics of savior siblings #cbr4

I would have never picked up The Match by Beth Whitehouse on my own. I read it as part of our Friends of the Libraries book discussion group. They read three books each semester and I try to read most of them. The Match is eye-opening, but definitely not a book to approach lightly.

The story follows the Trebing family after their daughter is diagnosed with Diamond Blackfan anemia, a debilitating disease that requires monthly blood transfusions. Because the transfusions lead to a build up of iron in the heart and liver, her parents begin to search for alternative methods. They find out that the bone marrow of a sibling with the same genetic match as their daughter could cure her, but would require a potentially life-threatening transplant. They use several cutting edge procedures to give birth to a “savior sibling,” including preimplantation genetic diagnosis (PGD) and in vitro fertilization.

The book does a fine job bringing up the ethical issues of preimplantation genetic diagnosis (PGD) and the idea of “savior sibling”. One question she discusses with doctors and ethicists is whether parents may use PGD to choose traits like eye color or intelligence. Another is the protection of the savior siblings and whether desperate parents wanting to save another child will consider fully the medical interests of the savior sibling. I can’t imagine any parent not loving their child,  treating them equally, and keeping them from as much harm as possible, but people are crazy (Toddlers in Tiaras are evidence of this).

Well-researched book about an extremely difficult subject. It is short and accessible though. I definitely recommend if you are interested in issues of medical ethics.

The Match

The Ghost Map

The Ghost Map: The Story of London’s Most Terrifying Epidemic–and How It Changed Science, Cities, and the Modern World

Finished: Jan. 17
Rating: A-

I have to admit I sometimes enjoy a good epidemiological history. Johnson’s account of the 1854 cholera outbreak in Victorian London is engaging, but the focus isn’t so much cholera as the larger challenges of urban living. Within the vein of epidemiological history, I preferred Marilyn Chase’s The Barbary Plague in which she describes the development of the bubonic plague in Victorian San Francisco from 1900-1909. Of course she had a larger event to describe so the focus stayed solidly on the plague. Johnson’s account seems a bit more scattered, but it reads well. His descriptions of the city and its…um…untidiness are strong enough that you feel like you could be standing (and smelling) in the middle of Soho. He is able to balance his narrative elements against his description of the cholera virus and medical aspects of the story.

As someone who enjoys the beauty of data visualization this book is a good look into the gathering of real life data and the illumination of a problem through the visualization of the data. Unfortunately, the idea of the ghost map felt a bit perfunctory like it was tacked on to the end of the story. Also, his epilogue, on the difficulties and triumphs of modern urban living in relation to sustainability, disease, and nuclear weapons while a fascinating read seem to take the focus away from his original story (and from the ghost map again). Overall it is a good read, especially if you like medical histories.