The Family Gene, by Joselin Linder

Nursing Book Club

The Family Gene, by Joselin Linder

A personal and scientific journey that reads like a medical detective story

By The Family Gene: A Mission to Turn My Deady Inheritance Into a Hopeful Future, by Joselin Linder (Ecco/HarperCollins, 2017)
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I’m sure there must be other readers out there like me: We understand that it was a big deal when the human genome was first mapped, but don’t quite get exactly why it was so important or what scientists are doing with that information. Reading author Joselin Linder’s book The Family Gene finally provided that “aha” moment.

Linder’s father became seriously ill the summer she turned 15. Through a series of family discussions, she discovered that the symptoms of her father’s illness were similar to ones previously exhibited by his brother, mother and grandmother, but no one knew exactly what the disease was. The answer lay in the family’s genes.

Genetic Mutations

In 2007, the World Health Organization catalogued a total of 12,420 different human diseases. However, the DNA sequencing database GenBank had already identified 22,000 disease categories based on DNA analysis. Thanks to gene sequencing, scientists are now able to identify unusual variations of certain diseases created through genetic mutation. Gene mutation can cause illnesses with a variety of symptoms, which may be passed on to children.

Groups that have a significant history of intermarriage, like the Ashkenazi Jewish population, are at elevated risk because it’s more likely that both parents will share the same high-risk gene. In some cases, the mutation can be traced back to a single common ancestor hundreds or even thousands of years ago. In other cases, the mutation may have occurred only a few generations back. 

Because some of these rare diseases may not have expression until the victim is an adult, sufferers sometimes have no idea that they or their children may be affected.

This is one of the reasons we now have genetic testing and genetic counseling: If researchers can pinpoint the specific genes involved in a congenital illness, it may be possible to reduce or eliminate the risk, or at least warn families of the danger before they have children.

Moral Questions

Linder walks us through her own family history and how researchers identified the presence of just such a disease. The author explains that she has elected not to have children, but some of her cousins of childbearing age also share the rogue gene. Others have not yet been tested for it. Thanks to the magic of in-vitro fertilization with pre-implantation genetic selection,  it is now possible to eliminate this high-risk variant. Linder omits any discussion of the ethics of that procedure, leaving the moral questions to the reader.

Sometimes, reading science can be difficult and can feel more like reading a textbook than an engrossing novel. In The Family Gene, Linder shares so much about herself that the reader becomes caught up in the drama of her family history, as if reading a medical thriller. 

It’s not until the last few chapters, which discuss the benefits of gene therapy and explore where medical genomics might be heading, that the book risks becoming bogged down in science. Even so, I found it enormously beneficial to my understanding of how vastly medicine has changed during my lifetime.

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