What if you knew that you had a 50% chance of inheriting an unpleasantly debilitating and always fatal progressive neural disease? And what if there were a test that would tell you whether you had the gene? Would you want to worry for the rest of your life, or would you want to plan for your decline? And, on top of that, what if you held life sacred for reasons of Christian belief?

Gina Kolata has put together a story that deftly combines this issue and the personal choices involved with the medical detective story wherein the familial disease is identified (not Huntington's, though the issues raised are similar). The family she writes about has some issues with closeness and separation, mostly coming out between the lines. She keeps the focus mainly on the strengths of the family and on how the young adult generation confronts the disease and the testing issue.

The book is blessedly short, and keeps the momentum going. We see the issue from the potential patients' side and from the medical side. I read the book in one sitting and I suspect you might too. HIghly recommended.

All that I can say is, wow. This was a well-written, well-researched and very moving account of the history of a genetic neurological disease that kills carriers of the disease in middle age in a very difficult and cruel way. The book particularly follows one American family that has been caught in the disease's crosshairs, the pain that both carriers and non-carriers in the family feel, and the decisions that they each need to make once the ability to be tested for the gene becomes available to them. I highly recommend this book.

If you had a strong probability of carrying a defective gene that would make you develop a disease leading to a prolonged unpleasant decline and an early death, would you want to know for sure if you had the gene? It’s not often that a nonfiction science book has an opening scene worthy of a thriller, but Mercies in Disguise had me hooked on the first page, as twenty-six-year-old Amanda Baxley sits with her mother and boyfriend, waiting to learn whether she carries a gene causing a fatal neurological disease that has been passed down in her family for several generations.
Science journalist Gina Kolata typically mixes science with the stories of the people affected by whatever realm of science she is exploring. Her books Flu and Rethinking Thin explored flu and obesity. In the present book, the science involves a fatal prion disease, genetic testing, and prenatal interventions to prevent inheritance of a defective gene. The human element does not mean that the science is dumbed down, though, and Kolata’s exploration of these subjects is rigorous enough to satisfy the most avid science buff, especially the discussion of kuru disease, which was discovered in a New Guinea tribe that engages in cannibalism and that led to the identification of prions, a strange type of infectious protein.
Although the science is not neglected, Mercies in Disguise leans more heavily on the human experiences than does most of Kolata’s other work, which is natural, given the challenges Amanda and the entire Baxley family face. First there is the frustration when medical experts cannot identify the disease, which had symptoms similar to both Parkinson’s and Alzheimer’s and was finally identified as one of a very unusual class of diseases that are infectious but can also be inherited. Once the responsible gene has been identified, each member of the family must decide whether to be tested. If you choose to take the test, you need to decide how to live your life if you do carry the defective gene. Should you or should you not have children? If you decide to have children, should you take advantage of available prenatal techniques to ensure that they will not have the gene? These are questions not just of rational science but also of personal philosophy and religion. For the Baxley family, their strong Southern Baptist heritage weighs heavily in their decision-making.
Kolata follows the Baxleys as they make their individual choices and support other family members, even when they do not agree with that person’s choices. The result is emotionally powerful and also thought-provoking as the reader wonders, “What would I do if I were in Amanda’s shoes?”


Good science, great family saga

The first half of the book was slow moving and rather repetitive, the second half was far more engaging. It presented enough information to allow the reader to understand the disease and invitro issues and procedures, while still allowing time to absorb the emotional impacts of living with a chronic disease.

The topic provides excellent fuel for religious and moral discussions.

This is a sad, heart-warming, poignant and tragic story about one family's journey facing a degenerative disease with no cure. The back story is about doctors and scientists trying to find the cause which now can be diagnosed with a blood test. Do you want to know if you carry the mutated gene and what do you do if you do have it? What are the the social, financial and moral dilemmas involved?

As we've come to expect from her, Gina Kolata has once again taken a difficult scientific, ethical, and moral issue and both made it understandable to this non-scientist but humanize it through the stories of an afflicted family in South Carolina. We live intensely with Amanda and Brad, Kathy, Billy, and others in this family who have suffered with the results of a prion malfunction. We laugh and cry with them as they watch loved ones suffer and as they confront their futures, making choices that no one should have to make. I read the book in one sitting, and if I had any complaint it would be that it ended too soon.

This is a wonderful book, extremely well written and tremendously compassionate. That cold moment when the thing you fear most comes true is illustrated both beautifully and painfully for each of those that had to confront it. And for those who dodged the genetic bullet, the double edged sword of survival while helplessly watching others succumb hangs over their heads.

The author makes the history of these types of diseases and the major players very accessible and understandable. She way she handles the scientific curiosity that begins the story that is both easy to follow and fascinating as she delves into the personalities of those men. Her discussion of the brain and its functions is remarkably clear for the complexity of its parts and functions. The portion about the posturing and infighting among the scientific community is an indictment of the closemindedness and pettiness of far too many people in medical research.

Bridging the abstraction of research with the reality of a real life mystery, the search for the gene, then the mutation, is an exciting pursuit. And while how we know how it ends for some, the promise of interventions in the future.

I read this book in 2 sittings, it was that engaging and enjoyable to read. Well done.

I was intrigued with this book as I have an interest in genetic disorders. I enjoyed reading about the perspectives from the researchers/doctors regarding how a genetic disorder is discovered, yet the most interesting portion of the book, to me, was reading about the family perspectives and the myriad of issues that having an illness of this type can affect people. I recommend this to anyone who may be facing these issues, as it made for an interesting and insightful read.

The book is written in a dispassionate, reporter style, but the subject matter is emotionally charged: a family, without any help from medical establishment initially, discovers that they carry a gene for a devastating neurologic disorder. It can be diagnosed, but not treated. It strikes at middle age. The book chronicles the family as they determine that the illness is related, that it is genetic and then make individual decisions about testing and reproduction. While the writing is swift and the book is a rapid read, the issues are profound and the decisions, impact and implications of knowing you carry a deadly genetic mutation, but there's no treatment--how knowledge impacts the individual and their families, is compelling and profound.

I have been a big fan of Kolata's work in the NYTimes for years, and loved her book on the 1918 flu epidemic. This one is a very personal story about multiple generations wrestling with a rare genetic disease that has killed numerous members, at a time when genetic testing was just coming into vogue. The issues faced by each person as to whether or not to be tested, and then once tested, what to do with the results, are heart-rendering. It shows how one malformed gene -- a one in a billion chance -- can cause such devastating results. This is well worth reading and knowing the families involved in this conflict.