Genome Sequencing in Babies and THE MOTHER SIEGE

The December 30, 2014, Wall Street Journal article “Genome Sequencing in Babies to Begin as Part of Study” by Amy Dockser Marcus has the subhead “A Genetic Blueprint to Carry Through Life and Help Develop Personalized Treatments.”

And that subhead implies numerous ethical considerations, many of which are the basis for themes in my dystopian novel THE MOTHER SIEGE.

The Journal article begins:

Doctors expect soon to begin sequencing the genomes of healthy newborn babies as part of a government-funded research program that could have wide implications for genetic science …

Such testing could provide doctors and parents a vast pool of data likely to reveal a wider range of potential medical risks than the traditional heel-prick test, in which a small sample of newborns’ blood is taken to check for more than two dozen possible conditions.

While at first this may seem a wonderful medical advancement, it comes with ethical concerns.

The Journal article concludes:

But Nicholas Catella, an engineer from Jamaica Plain, Mass., says he wouldn’t be interested in newborn screening unless his child’s health was at acute risk. Mr. Catella, who has two children, ages 3 years and 16 months, says sequencing might reveal information about health risks like Alzheimer’s disease, which occurs later in life and for which effective interventions aren’t yet available …

THE MOTHER SIEGE begins in 2049 when most genetic conditions are tested in vitro and the uneconomic health issues in fetuses dealt with by mandatory “elimination.” Those conditions — or the tendency to develop those conditions — that can only be tested at birth are done so then. And those newborns with possible future uneconomic health issues are immediately “eliminated.”

Yes, THE MOTHER SIEGE is science fiction. Yet our reality is rapidly getting closer to science fiction. And it will be important to consider these issues now rather than when it might be too late.

For more details on THE MOTHER SIEGE, including information on the completed movie screenplay, read the blog post “Update on Dystopian THE MOTHER SIEGE.”

And if you want to read THE MOTHER SIEGE novel, it is now available for free on Wattpad at http://budurl.com/MSintro, and I hope you find the story entertaining as well as encouraging thought on these “future” issues.

© 2015 Miller Mosaic LLC

Phyllis Zimbler Miller (@ZimblerMiller) is the author of fiction and nonfiction books/ebooks, including TOP TIPS FOR HOW TO PUBLISH AND MARKET YOUR BOOK IN THE AGE OF AMAZON and the romantic suspense spy thriller CIA FALL GUY, as well as newly written books not yet published. She can be reached at pzmiller@gmail.com

2 Comments

  1. The Mother Siege sounds great! I have family members who have experienced those ethical concerns. It is likely that they carry a genetic marker that puts them at risk of breast and ovarian cancer. Until the 2008 Genetic Nondiscrimination Act, they couldn’t do genetic testing to find out if they carried it because it would have made their health insurance too expensive.

    1. Joshua —

      Thanks so much for sharing this information about your family members. I hadn’t known about the 2008 Genetic Nondiscrimination Act, but I am very concerned about how genetic knowledge can impact people’s lives in many arenas.

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