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The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have

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A sharp-eyed exploration of the promise and peril of having children in an age of genetic tests and interventionsIs screening for disease in an embryo a humane form of family planning or a slippery slope toward eugenics? Should doctors tell you that your infant daughter is genetically predisposed to breast cancer? If tests revealed that your toddler has a genetic mutation whose significance isn’t clear, would you want to know?In The Gene Machine, the award-winning journalist Bonnie Rochman deftly explores these hot-button questions, guiding us through the new frontier of gene technology and how it is transforming medicine, bioethics, health care, and the factors that shape a family. Rochman tells the stories of scientists working to unlock the secrets of the human genome; genetic counselors and spiritual advisers guiding mothers and fathers through life-changing choices; and, of course, parents (including Rochman herself) grappling with revelations that are sometimes joyous, sometimes heartbreaking, but always profound. She navigates the dizzying and constantly expanding array of prenatal and postnatal tests, from carrier screening to genome sequencing, while considering how access to more tests is altering perceptions of disability and changing the conversation about what sort of life is worth living and who draws the line. Along the way, she highlights the most urgent ethical Is this technology a triumph of modern medicine or a Pandora’s box of possibilities?Propelled by human narratives and meticulously reported, The Gene Machine is both a scientific road map and a meditation on our power to shape the future. It is a book that gets to the very core of what it means to be human.

288 pages, Kindle Edition

First published February 28, 2017

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About the author

Bonnie Rochman

3 books11 followers
Bonnie Rochman is a former health and parenting columnist for Time.com who has written for publications including The New York Times Magazine, The Wall Street Journal, Scientific American and O the Oprah Magazine. She lives with her husband and three children in Seattle, a great base from which to go hiking in the Cascades.

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5 stars
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Displaying 1 - 26 of 26 reviews
Profile Image for Jeanette.
4,225 reviews865 followers
March 17, 2017
Excellent and technical survey for the sequencing of human DNA material, especially in the process of care for all newborns. For and against sequencing your baby or spouse (in vast detail) is included. Early in pregnancy with abortion as an alternative choice has a chapter of its own. Or be it for diagnosis, prevention for conditions that will tend to develop if unknown, for metabolic treatment or numerous other applications. Just to KNOW. Or NOT. Or as a young child or young adult to sequence to know your future disease susceptibility? She gives cases for this in several large family situations.

Is more knowledge always better? This author and many others she sources and quotes believe, with some reservations, that it is.

It covers too many possible conditions and sequential voids or duplication fragments to list here. In most cases, DNA of both parents is essential for case/effect information. But in testing newborns before they leave the hospitals of their births, larger and larger numbers of conditions are being included in those "necessary and required tests". And not all parents agree with this progression to more is more.

It's vastly interesting, the entire book. She does also play the "devil's advocate" for those who for numerous and some excellent reasons do NOT want to know the entire stories written in their genes.

The costs drivers inherent in all this testing! Not a topic in this book to the extent it needs to be. Not at all. Or that each path of "knowledge" leads to more testing and further, deeper $$$ questions. And to be fair, some of those paths lead to few answers, other than a "maybe" but "don't worry about it" answer. Which for some is a Pandora's Box of not being able to unlearn and carries significant psychological impact over self-identity.

The only cost information that was included to the extent I think it deserves was within the story of the Duke associated geneticist specialist. Who is NOT an earner (and she is least favored by her hospital administrators in this category of care). One of the reasons is that she spends at least 90 minutes with each subject before the blood draws. There are many psychological aspects to familial care in her field. And each and every family is different for reactions and moral relativity. In fact within Down's families there is vast opposition to "others'" practical applications, in some cases.

Psychological fall outs of knowledge do occur. Negative ones and positive ones. Those aspects are thoroughly included for most of her discussed cases. Even within the most dire circumstances, Bonnie Rochman seems consistently respectful and considerate for all her sample babies/families.

Reading this book, I am super glad I had my own kids in the days that I did.
Profile Image for Leah Rachel von Essen.
1,454 reviews181 followers
March 13, 2017
Award-winning journalist Bonnie Rochman’s new book, The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have asks questions that will trouble and disturb as it explores the rapid development of gene technology and genetic advancement. I received this copy of the book from the author and publisher in exchange for an honest review, and read it slowly, my brain not quite in the right place to read a science non-fiction book but excited by the subjects involved.

The questions are fascinating. For example: would you want to test your own genes to see if you were going to give your children a genetic disease before you carried the baby to term? Would you abort the pregnancy if your child had a disease where they would die painfully after only a few years? Maybe those questions were simple enough to answer: of course, and then I wouldn’t want to bring a life into this world just for it to suffer. But what if the child has a disease where they’ll die in fifty years? What if they have a gene that means they have a much higher chance to get breast cancer? What then? These questions continue to proliferate, the deeper into the topic you get. What genetic information should we look for, and what do parents have the right to know? Does it help to tell a parent about a genetic mutation that might not mean anything at all? Should you tell someone they might have an untreatable disease if it’s only an incidental or secondary result of the test? Should parents have the right to demand genetic information on behalf of their children, or should they have to wait for the child to be a teenager or 18, old enough to elect for the information themselves—does knowledge of a potential harmful gene rob children of an open future? If we test every child for Down Syndrome in order for parents to abort pregnancies where a child is affected—is that wrong? Does it reveal something very disturbing about our approach to the disabled—and if so, how much less disturbing is the choice by two deaf parents to select an embryo in order to have a deaf child? The questions in Rochman’s book are compelling, and get more and more complicated, twisted, and confusing. If you thought you knew where you stood on these issues before, you’ll likely soon find that you’re wrong.

There are stories to accompany every chapter and issue tied to genetic science. One thing that bothered me about Rochman’s writing is the way she would loop away from a story only to rehash most of it when she came back to it every time, as if the reader could only recall five pages at a time. Each time, it made me feel as though she was introducing a new story, which somewhat threw me off the emotional aspects of each family’s tale. So many of the stories are compelling however, and despite the repetition of some points and questions, Rochman’s research is clear, and it’s impressive how carefully she’s included all viewpoints on each issue, revealing the complexity within each question and each answer. She deals straightforwardly with how abortion plays into these questions. At one point, just when the reader is beginning to go, “Well, of course, I would abort if it’s a fatal disease at the age of three and my child would have a miserable life of pain,” she then tells us the story of a woman whose son was diagnosed prenatally with a devastating disorder—only to never develop it. I wasn’t in the mood for a scientific text, but there’s no denying that Rochman’s The Gene Machine is compelling, well-researched, mystifying, and, if I’m honest, terrifying.

“To what end are we willing to go to detect disability? Once we find it, is there a dividing line between ‘good,’ or tolerable, disabilities, and ‘bad,’ or intolerable, limitations? How do we decide which ones may warrant abortion and which are acceptable? What feels overwhelming to one person—the birth of a child with a genetic disorder—may feel like God’s gift to another. Who are we to judge what—who, more accurately, is a gift and who is a burden?”

“‘Are we going to abort fetuses because they can’t run a marathon?’ says Kaback. ‘You get into complicated issues of quality of life.’”

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Profile Image for Steve Stanton.
Author 15 books32 followers
March 19, 2017
This is an excellent summary of the advances being made in genetic technology, some of them now bordering on science fiction! Humans are on the verge of eliminating all defects in the genome as we begin to analyze our DNA down to the building blocks. The author presents critical case studies and poignant anecdotes to bring the science to life in this book. With all the amazing technology available today for preimplantation screening, the next generation may wonder whether natural conception is worth the gamble.
Profile Image for Ietrio.
6,943 reviews24 followers
April 9, 2017
Fuel for the confirmation bias of those scared of the new. How the imaginary good old times are replaced by a new and uncertain future. Luckily the life goes forward. Sadly the state is now powerful enough to eviscerate research in most areas.

So read about "the Pandora's box" of not having disabled children or the "sad" women who now can choose if they want to be a breeder and birth each time they have sexual intercourse.

Oh! And proof the book is done by an English or Journalism major who could not dream of understanding genetic research even in the wildest dreams: we have no idea how these are changing the demographics because research is obstructed at any level by the state and busybodies who majored in Humanities. As for parenting, that has nothing to do with genes and everything to do with trends and psychology. Proof of the fundamental ignorance on which the author bases the articles.
Profile Image for Emily.
175 reviews
February 26, 2018
Such interesting information. I’m really glad to be more informed on this topic now. I think genetic technology is a topic that will be getting a lot more attention in the coming years. I also appreciated how objective the author was able to remain even about topics like abortion for reasons of disability in a fetus. I thought the book was well-planned; the author took a very professional and scientific tone, yet also included lots of anecdotal examples (from all different sides of each issue) to make it feel more personal for a layperson (like me).

Although I really enjoyed the book, I wouldn’t call it an easy read by any means. It reads a little like a textbook at times. It took me a couple weeks to get through. I recommend it to those who are really interested in the subject.
37 reviews2 followers
April 30, 2017
The once SciFi world of genetics testing and treatment is rapidly moving out of the "can you" into the realm of "should you". The author highlights the choices and personal stories. And, journalistically, stays out of the conversation but shows us the many facets of the story. CRISPR and MRT (Mitochondrial Replacement Therapy) addressed in last chapter.
Profile Image for Fazrin Jamal.
103 reviews1 follower
September 5, 2023
This book is about genetic diseases and how modern technology allows parents to have healthy children.

I love this book for several reasons. First, it directly or indirectly ask readers a dozen difficult moral questions, such as:
(a) if you were carrier of harmful genetic mutation, for example, BRCA1 that increases risk of getting breast cancer by fivefold, would you have children the traditional way or by Preimplantation Genetic Diagnosis technique (identifying genetic abnormalities in embryos created with IVF before transferring the healthy ones into the uterus & discarding the abnormal embryos).
(b) If microarray test revealed the fetus you carried has extra twenty-first chromosome that causes Down Syndrome, will you proceed with the pregnancy or will you abort it? What if the detection occurred during the third trimester?
(c) If your family has history of genetic disease, do you welcome CRISPR - gene-editing technology that can modifies gene by enlisting a protein called Cas9 to home in on an individual defective DNA sequence and repair the mistake? Do you trust this emerging technology even when DNA is still largely unknown and the editing could affect other bodily function?

The amount of research poured into this is unbelievable and I love how the author give equal space for differing viewpoints on this hot button issues. And she did it with empathy. I totally disagree with some parents and scientists interviewed here who think full disclosure of gene sequencing results to parents is unethical but from the many examples mentioned, I do however understand their reasoning.

I highly recommend this book. A book that I read with wet eyes.

⭐ ⭐ ⭐ ⭐

Read from Aug 28 - 5 Sep
Profile Image for Emily.
251 reviews7 followers
October 30, 2022
3.75/5 stars

This book was a good enough intro into the field of genetics. I realize that genetic sequencing and engineering is a new, up and coming field that humans have little knowledge of compared to other things. However, this book felt so repetitive. It relied on the same formats about the same things, just with different examples throughout the book. Also, I was somewhat disappointed about the lack of genetic engineering information in this book. It was mainly about genetic sequencing in the same ways, over and over again.

Overall, this book was repetitive but is fine if you are interested in a broad, introduction to genetics. This book had so much potential but just fell short for me.
Profile Image for Katie.
500 reviews7 followers
August 15, 2017
This book was written by a science reporter, but almost read like it was written by a genetic counselor. It was about many of the genetic testing options available pre-conception, pre-natally, and after a child is born. It had lots of great case studies about couples who have wrestled with decisions around genetic testing, and it highlighted some of the ethical dilemmas that can arise from all the information that can be generated by these tests. It would be a terrific book for anyone who might be considering the field of genetic testing or anyone interested in the field of genetics.
Profile Image for Viewpoints Radio.
75 reviews3 followers
June 27, 2017
Science enables us to know much more than ever before. We can be aware of what disorders we could pass on to our kids and we can conduct screenings on children to discover irregularities in their genes. Such screenings can help doctors catch issues early… but they can also put a huge burden on families. We speak with Dr. Bonnie Rochman about this and more. Listen here: https://viewpointsradio.wordpress.com...
Profile Image for Jerrid Kruse.
826 reviews15 followers
October 8, 2017
A nice history of the development of genetic testing, the current capabilities, and the new ethical issues that arise with the new technology. I thought the author investigated the ethical issues well, but was a little disappointed with the underselling of the issues in the last page. Means to an end? Yes. However, do the ends justify the means? So far, I'd argue yes. But going forward, we should keep asking the second question.
Profile Image for Laine Goudy.
5 reviews14 followers
September 11, 2018
Overall a very well researched account of the technological advancements within genetic engineering today. Bonnie Rochman does a decent job of playing devil's advocate for most of the ethical quandaries she discusses.

Is it morally wrong to “play god”? To unnaturally conceive by selecting an embryo without a genetic mutation? If yes, is it morally right to bring a child into the world who is at known risk of carrying a mutation that could diminish their quality of life?

How much information is too much? Do geneticists have the obligation to divulge all genetic information, such as cancer risk 40 years down the road, or should they only report more immediate health threats? When sequencing a child’s genome, who has the rights to that data, the child or the parents?
Profile Image for Karina.
132 reviews1 follower
March 26, 2019
This book is fascinating! I have read several other books on similar subjects, and I think Rochman does an excellent job of exploring different sides of so many of the current issues: particularly genetic testing and the issue of transparency in how the results relate to children and their parents. Overall, I really enjoyed her thoughtful, and to my reading, nonjudgmental presentation of the different sides of the issue. Thoroughly recommend to anyone interested in this subject.
Profile Image for Ashok Samuel.
21 reviews
November 12, 2020
Not very impressed with the narrative (sadly!). Further, I was expecting more genetic details of the diseases and current practices using genetic tools. The book mostly (I feel) discusses ethical issues, public view points of genetic "treatments" and a few experiences described by doctors and families of patients. The title of the book should have been something like, "Human society at the time of advancing genetic tools".
Profile Image for Deepa Krishnan.
142 reviews3 followers
June 29, 2017
Very informative. Had the feeling I had while reading Glow Kids - scary and amazed. But I couldn't tell if the author was for these technologies or against. You could argue either way and there are ample examples in the book that keep you ambivalent but I expected the author to have a stance. Not that I am disappointed but the author herself was just like me, swaying this way and that way.
Author 2 books1 follower
July 28, 2017
Rochman has done a great job with exhaustive reporting and contemplation of the ethics and miracles of genetic manipulation and selection. I will be recommending the book to my patients with questions about genetic diseases and assisted reproduction.
Profile Image for Malavika.
135 reviews8 followers
January 12, 2018
A great overview of what's going on in clinical genetics right now.
Profile Image for Melissa.
529 reviews
February 26, 2019
A lot of different depths for different situations. I found the information useful and easy to understand.
Profile Image for Rhiannon Johnson.
847 reviews303 followers
February 3, 2018
Read my full review here: https://ivoryowlreviews.blogspot.com/...


My review:
This book popped onto my radar at the end of last year but since it is not the type of book I usually review, I was unable to access an early copy. Then I saw that Bonnie Rochman was going to be at Decatur Book Festival so I checked to see if my library had a copy. My plan was to read the book before attending her session, but at the last minute I was unable to attend the festival due to a killer migraine. I was still so fascinated by this topic that I moved the book up in my reading list (that's pretty major for me). I really loved how the book was divided into 8 chapters that showcased the multiple options and futures for testing our genes. I studied genetics in college and was briefly considering a career in the field. This book really lit that long dormant fire and I am looking to move more of my reading into the subject (another major move for me).

Quick Biology 101 refresher: Each cell in our body has 23 pairs of chromosomes and an estimated 19,000 genes. Our complete set of genetic material (in every cell) is a genome.

"As technology has evolved, the price to sequence a human genome has dropped precipitously, plummeting from $17.5 million in January 2005 to $47,000 in January 2010 to the relatively paltry sum of just under $4,000 in January 2015."
(p 193)

While $4,000 isn't pocket change, some insurance companies pay the cost when other testing options for a disease or health problem have been exhausted. It is also easy to see that the price will likely drop further in years to come and make sequencing your genome accessible to more and more people. But even as it becomes possible, deciphering the massive amount of data will require additional work from scientists and geneticists. Which brings up the questions of how much information doctors feel should be revealed to each person; when it should be revealed; and the division of information between parents, children, and additional family members.

As this technology evolves and there is more access to genomic databases and massive amounts of information, an exponential number of new questions arise and Rochman does a perfect job of highlighting both sides of dozens of situations. The concept of choosing optimum embryos was once a futuristic, mind blowing concept. Now, IVF is a relatively common term and procedure. As the science evolves, new questions and arguments will arise and it is essential to be educated on a topic before planting your flag in the ground and not budging. For that reason, I would definitely recommend this book to anyone interested in researching the science behind, and the future prospects of, our genes. Rochman covers topics ranging from BRCA1, selective abortions, Down Syndrome, gene silencing, patient rights, parents' rights, sequencing newborns, and so many more.

I was very pleased that this book remained solely scientific yet still focused on a variety of ethical and moral implications, all without indulging in the arguments brought forth from religion. While I borrowed this from my local library, I will be purchasing it for my personal library.
20 reviews
July 5, 2022
The author came and gave a talk at the office (which I missed) so I read the book instead. Overall it seems like the author wrote a good newspaper/magazine article on the topic, was given a book deal, and then proceeded to stretch the same content out into book length. I learned some information I didn't know before about history, use cases, and considerations in genetic testing but overall she didn't present a subjective and compelling viewpoint on the topic, just an overview of the current state.
Profile Image for Andrew.
130 reviews2 followers
April 23, 2017
An incredibly interesting and thought-provoking book. It raised several important questions that I had not fully considered, including the effect of "imperfect" information on quality of life. For instance, should we tell someone that they have a genetic predisposition towards Alzheimer's (5%? 25%?) if they're not being specifically tested to determine that possibility? What if the person being tested is only 10 years old? What if they're 30? Or 50? At what point do we want to start infringing on someone's peace of mind?

This book doesn't try to answer the questions it poses, but it does a really good job of explaining the issue and then discussing reasons for and against. If you're interested in genetics, like the movie Gattaca, or are interested in having a child, then I would highly recommend this book.
Profile Image for Julie.
194 reviews3 followers
Want to Read
July 3, 2017
Author is former N&O reporter.
Displaying 1 - 26 of 26 reviews