Project and content management for Contemporary Authors volumes
WORK TITLE: The Gene Machine
WORK NOTES:
PSEUDONYM(S):
BIRTHDATE:
WEBSITE: http://www.bonnierochman.com/
CITY: Seattle
STATE: WA
COUNTRY:
NATIONALITY:
https://us.macmillan.com/author/bonnierochman/ * https://www.linkedin.com/in/bonnierochman/
RESEARCHER NOTES:
LC control no.: n 2016187033
LCCN Permalink: https://lccn.loc.gov/n2016187033
HEADING: Rochman, Bonnie, 1972-
000 00401nz a2200133n 450
001 10224400
005 20160804044106.0
008 160804n| azannaabn |n aaa
010 __ |a n 2016187033
035 __ |a (DNLM)1701856
040 __ |a DNLM |b eng |c DNLM |e rda
046 __ |f 1972-07-25 |2 edtf
100 1_ |a Rochman, Bonnie, |d 1972-
670 __ |a The gene machine, 2017: |b ECIP title page (Bonnie Rochman) data view (b. July 25, 1972)
PERSONAL
Born July 25, 1972; married; children: three.
ADDRESS
CAREER
Journalist. Former health and parenting columnist, Time.
WRITINGS
Contributor to periodicals and media outlets, including NBC News, New York Times Magazine, O, the Oprah Magazine. Scientific American, and Wall Street Journal.
SIDELIGHTS
Journalist Bonnie Rochman is the author of the study The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids–and the Kids We Have, an investigation of the science and the ethics behind modern gene therapy. “The Gene Machine uses a series of anecdotes to explore the ethical questions that arise with the expanding use of these technologies,” declared Evelyn Litwinoff on the Cooper Square Review website. Gene therapy offers a way to correct diseases that are transmitted through families, but at the same time that information can prejudice a child’s opportunities in the world. “Genetics is incredibly complex for lots of reasons,” Rochman said in an interview with Christopher Lane found in Psychology Today. “For one, genetic data offers insight not just into one individual but frequently it sheds light on multiple generations, both past and future. The `DNA = destiny’ assumption further muddies the waters. In some cases, a DNA change equals disease; in other cases it indicates increased risk of disease; and in still other situations it’s unclear what, if anything, it actually means. The situation becomes even more complicated if you consider that so many conditions don’t have treatments or cures.” “With the genetic screening of infants and embryos sparking hot-button debates in medicine, health care, and bioethics,” Rochman told Lane, “smart and practical advice for would-be parents is crucial.” At the same time, Rochman stated in her interview with Lane, “people are neither reassured nor beset with worry but energized by thinking about all the ways that genetic tech is reshaping the human experience, specifically as it relates to pregnancy and parenting, but more broadly as well.” The volume, the Kirkus Reviews contributor concluded, presents “solid research into the dilemmas regarding genetic screening.”
The question of testing—whether it is better to test children and find out if they have a genetic predisposition toward a disease or not—is central to The Gene Machine‘s argument. “Rochman’s text … serves as a reminder that tech is at its most (literally) vital when focused on the question of suffering,” wrote Navneet Alang in the Toronto Globe and Mail. “The Gene Machine tries to answer the questions raised now that we are gaining the ability to not just recognize genetic conditions in the womb, but also prevent, or even fix them, in utero. One example: Tay-Sachs is a disease that results in slow nerve degeneration in babies, with the vast majority of sufferers not living past the age of four. The implementation of a comprehensive screening program, however, means the disease can be recognized in fetuses.” “Knowledge can be power,” observed a Kirkus Reviews contributor, “but as Rochman rightly points out, sometimes the ability to know doesn’t mean one should know.” “For better and for worse, Rochman remains neutral,” said Litwinoff, “letting the stories she tells unfold with little comment, thus allowing readers to form their own opinions. As she admits in the introduction, `This book is not about right or wrong answers, only extremely personal and intimate calculations.’ As a scientist myself, I appreciate Rochman’s attempt to let the information stand on its own, but I found myself wanting to know her take on the issues she presents.” Rochman, wrote New York Times Book Review contributor Ezekiel J. Emanuel, “has a hard time explaining what might be called Huntington’s paradox: Before the gene for Huntington’s disease was found, about three-quarters of at-risk people wanted to know their genetic status. But after a test became available, only twenty-five percent wanted to know. In the abstract, more information always seems desirable. In reality, not so much. Why? Maybe because being able to imagine hopeful paths seems to be hard-wired. For most people, genetic tests that predict the future, especially when there is no intervention, provide oppressive, not liberating, information.”
In general, critics enjoyed Rochman’s work. “Rochman’s thoughtful take,” declared a Publishers Weekly reviewer, “highlights important issues for parenting in an increasingly high-information world.” “The author,” wrote Tina Chan in Library Journal, “delves into an intriguing and intimate topic with sensitivity and compassion.” “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,” said Rhiannon Johnson in Ivory Owl Reviews. “I was very pleased that this book remained solely scientific yet still focused on a variety of ethical and moral implications.” “Meticulously reported,” concluded a reviewer for the Science Book a Day website, “The Gene Machine is both a scientific road map and a meditation on our power to shape the future.”
BIOCRIT
PERIODICALS
Globe and Mail (Toronto, ON, Canada), February 24, 2017, Navneet Alang, review of The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids–and the Kids We Have.
Kirkus Reviews, January 1, 2017, review of The Gene Machine.
Library Journal, December 1, 2016, “Genetically Speaking,” p. 120.
New York Times Book Review, March 19, 2017, Ezekiel J. Emanuel, “Tinkers and Tailors: Three Books Look to the Biomedical Frontier.”
Psychology Today, May 6, 2017, Christopher Lane, “Side Effects: The Gene Machine: An Interview with Bonnie Rochman.”
Publishers Weekly, January 9, 2017, review of The Gene Machine, p. 57.
ONLINE
Bonnie Rochman Website, http://www.bonnierochman.com (October 25, 2017), author profile.
Cooper Square Review, http://coopersquarereview.org/ (October 25, 2017), Evelyn Litwinoff, “Molecular Machinations.”
Ivory Owl Reviews, http://ivoryowlreviews.blogspot.com/ (September 7, 2017), Rhiannon Johnson, review of The Gene Machine.
Macmillan Website, https://us.macmillan.com/ (October 25, 2017), author profile.
Science Book a Day, https://sciencebookaday.com/ (March 20, 2017), review of The Gene Machine.
Bonnie
HOME
BIO
BOOKS
ARTICLES
NEWS & EVENTS
ochman
R
Email Bonnie
Bonnie Rochman is an award-winning journalist. A former health and parenting columnist for Time magazine, she has written for The New York Times Magazine, The Wall Street Journal, NBC News, Scientific American, and O, The Oprah Magazine. She lives in Seattle with her husband and three children.
Like Me
Email Me
Follow Me
Macmillan Childrens Publishing Group
Search
Advanced
search
BOOKS
AUTHORS
COMMUNITY
BONNIE ROCHMAN
Bonnie Rochman
Dov Pinker
Bonnie Rochman is an award-winning journalist and author of The Gene Machine. A former health and parenting columnist for Time.com and staff writer for Time magazine, she has written for The New York Times Magazine, The Wall Street Journal, MIT Technology Review, Scientific American, and O, The Oprah Magazine. She lives in Seattle with her husband and three children.
Bonnie Rochman
Facebook Author Page
Author Twitter Account
Author Web Site
RELATED LINKS
Goodreads
SIGN UP FOR
AUTHOR UPDATES
Enter e-mail address
Submit
MACMILLAN NEWSLETTER
Sign up to receive information about new books, author events, and special offers.
Sign up now
Author on the Web
Books by the Author
AUTHOR ON THE WEB
LATEST ON FACEBOOK
LATEST ON TWITTER
Dov Pinker
Bonnie Rochman
Facebook Author Page
Author Twitter Account
Author Web Site
RELATED LINKS
Goodreads
BOOKS BY THE AUTHOR
The Gene Machine
grating
The Gene Machine
Bonnie Rochman
Farrar, Straus and Giroux
Scientific American / Farrar, Straus and Giroux
A sharp-eyed exploration of the promise and peril of having children in an age of genetic tests and interventions
Is screening for disease in an embryo a humane form of family...
AVAILABLE IN:
Physical Book
eBook
Buy
ABOUT
Macmillan Home Page
About Macmillan
Press
Careers
Contact Us
Sustainability
Macmillan Code of Conduct
Macmillan Code of Ethics for Business Partners
SERVICES
Publishers
Booksellers
Academic
Library
Catalogs
Podcasts
Macmillan Speakers
Special Markets
Macmillan Distribution UK (MDL)
Alternative Format Request
PUBLISHERS
Celadon Books
Farrar, Straus and Giroux
First Second
Flatiron Books
Henry Holt & Co.
Macmillan Audio
Picador
Quick and Dirty Tips
St. Martin’s Press
Tor/Forge
Distributed Publishers
CHILDRENS
Macmillan Children’s Publishing Group
FSG Books for Young Readers
Feiwel & Friends
Holt Books for Young Readers
Imprint
Kingfisher
Roaring Brook
Priddy Books
Starscape/Tor Teen
Square Fish
Young Listeners
Swoon Reads
MACMILLAN GLOBAL
PanMacmillan Australia
PanMacmillan UK
PanMacmillan South Africa
PanMacmillan India
Fischer Verlage
Rowohlt
Kiepenheuer & Witsch
Verlagsgruppe Droemer Knaur
Argon Verlag
Privacy NoticeTerms of UsePiracySite MapVisit our Corporate Site
Powered by Supadü
© 2017 Macmillan
Psychology Today
Find a TherapistTopicsGet HelpMagazineTestsExperts
Find a Therapist
City or Zip
Christopher Lane Ph.D. Christopher Lane Ph.D.
Side Effects
The Gene Machine: An Interview with Bonnie Rochman
The expanding influence of genomics on our lives.
Posted May 06, 2017
SHARE
TWEET
EMAIL
MORE
Scientific American/FSG, 2017
Source: Scientific American/FSG, 2017
With the genetic screening of infants and embryos sparking hot-button debates in medicine, health care, and bioethics, smart and practical advice for would-be parents is crucial. Award-winning health journalist and parenting columnist Bonnie Rochman has published a book on these issues and the parents who wish to navigate them, The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have, already widely-reviewed and acclaimed. I recently caught up with Bonnie to discuss The Gene Machine and the many issues it raises.
CL: In reading and thinking about your fascinating book, I’m struck by how often tension arises for the parents you interview between what they could know about the genetic makeup of their child, including what specialists are urging them to know, and how prepared or resistant they are to processing that knowledge. You’re clearly on the side of the right and even need to know — you open the book with Socrates declaring, “The unexamined life is not worth living,” a strong statement in this context. But as you point out, sensitive issues arise over genetic information, with patients sometimes feeling they become “hostages to fortune.” Could you say more about that tension and how it might be navigated?
BR: The tension between what parents could potentially know about their children’s DNA and what they actually want to know is a theme that’s woven throughout the chapters. Much of this stems from a lack of understanding about what genetic tests in general reveal on a large scale (risk for disease versus actual disease, for example) and the pros/cons of specific tests. How can this confusion be addressed? By relying on genetic counselors! I envision a world in which genetic counseling is part and parcel of the whole pregnancy package. Ideally, wannabe parents would access this counseling before testing so that they can make informed decisions about which tests, if any, are right for them. An interesting side note is that I often heard from parents that they chose to do genetic testing with their first pregnancy but not with their second, or vice versa. So just because you decide one way at one time doesn’t mean you will necessarily make the same decision in subsequent pregnancies.
CL: In the polling you cite, “83 percent of new parents expressed interest in sequencing their babies’ genomes,” largely because there are preventive or helpful steps they can take for a host of medical conditions. At the same time, most of the parents you interviewed hadn’t quite anticipated that they might receive unfavorable or ambiguous results, with pointers that may not be “medically actionable” or with information that’s maddeningly vague. Do you think there are ways of preparing psychologically for such uncertainty, and does the real risk of living with it challenge your conviction that parents should unearth all the genomic information they can, to try to prevent known risks?
BR: Deciding whether or not to proceed with sequencing your child’s genome is a very different decision depending on what’s prompting you to consider the test in the first place. Parents whose children are sick with undiagnosed diseases have strong motivation to try to figure out what’s ailing their child. They are not as freaked out by the potential for discovering unclear results because they hope they’ll find a clear result — one that explains their child’s symptoms. On the other hand, parents who have every reason to think their child is healthy may be more reluctant to dive deep into their kid’s 20,000-plus genes for fear of what they may learn, particularly if there’s nothing to do about it. And then there’s a vast swath of people who fall somewhere in the middle. With the conversation focusing now on sequencing newborns’ genomes, it’s important to keep talking about the truth that in many cases, DNA is not destiny.
article continues after advertisement
CL: I was especially struck by the eloquent letter you reprinted from Maya and Andrew Hewitt to their providers at the Children’s Hospital of Philadelphia (CHOP): “We are beside ourselves with grief at the possibilities that you have now opened up for us and, in many ways, feel that you have unethically robbed us of our family’s peace of mind by performing tests beyond what we were anticipating.” Part of the issue here is the “right to an open future,” unfettered by a potentially devastating prognosis. At the same time, with infants unable to give consent to such sequencing and small children (even parents) unable to grasp its full or lived implications, how best should it be relayed and who should make the call about what results to return, especially for conditions they can’t do anything about?
BR: The key to defusing this powder keg is transparency. That is, parents shouldn’t be blindsided by information they weren’t seeking. Instead, they should be asked before their kids are tested what sort of results they’re interested in receiving. In the book, I highlight one such web-based program, My46 (named after the number of chromosomes that comprise a person). It’s a repository for genomic sequencing data, and parents — anyone who uses the site — can decide what sorts of results they want to know. The brilliant thing about this is that the data you don’t want to access right now — say, for example, mutations detected in a child that increase the risk of adult-onset cancer — will be there waiting for if you (or your child once she reaches adulthood) decide you do want to access that information. To me, this seems like the most reasonable and democratic way to share results of genetic testing.
CL: That issue of access to information and when to screen it comes up a lot at the end of your book, as when you ask: “What if it were possible to neatly sidestep many of these paternalistic questions of access — of who owns your data, what information labs and doctors are obliged to return, and what information they’re better off keeping under wraps — by flipping the paradigm? Instead of letting the decision-making power rest with the medical establishment, what if the patient’s rights were paramount?” Yet the earlier example of the Hewitts points to a complexity beyond “paternalism,” as when they told you: “We didn’t know what we were stepping into, and we are very educated people.” In short, are the issues simply “sidestepped” by putting them in the hands of parents? I’m also recalling the moment you quote Nancy Spinner, from the cytogenomics lab at CHOP: “I’m starting to think we need to back off … [and] should be more careful about overcalling things.”
article continues after advertisement
BR: Genetics is incredibly complex for lots of reasons. For one, genetic data offers insight not just into one individual but frequently it sheds light on multiple generations, both past and future. The “DNA = destiny” assumption further muddies the waters. In some cases, a DNA change equals disease; in other cases it indicates increased risk of disease; and in still other situations it’s unclear what, if anything, it actually means. The situation becomes even more complicated if you consider that so many conditions don’t have treatments or cures. But if a doctor or a lab withholds that sort of genetic data from parents, that forecloses on their right to know. On one hand, you may be doing them a favor by sparing them from information about which they can do nothing. On the other hand, what if a drug is developed to treat their child’s condition but the parents don’t know that their child has the condition? That concerns me.
CL: Switching the focus a bit, to who owns the data and where they end up: Scientific American health reporter Charles Seife called 23andMe, a company you mostly cite favorably, the “front end for a massive information-gathering operation against an unwitting public,” with potentially “terrifying” consequences, given the scale and intimacy of the information shared. Comparable warnings have appeared in the Washington Post and New York Times, to a public that may be overly-enamored of the technological potential or altogether underestimating its financial and medical consequences. Part of Seife’s concern is that the information, once shared, is almost impossible to delete and, given genetic similarities among families, extends far beyond the individual. You end the book discussing safeguards against the misuse of data, but those seem likely to buckle the moment they collide with financial interests — I’m thinking of your own example of the medical insurers incentivizing genetic testing and data-sharing in return for lower premiums… Is there a risk you’re underestimating what could happen to such data by viewing it through the more benign and commendable lens of medical gains?
BR: That’s certainly a possibility. But I think that other approach is more fear-based. Like the Socratic epigraph I use, I’m in favor of knowing. That whole “knowledge is power” thing rings true for me, perhaps because I’m a journalist weaned on “what” and “how” and “why.” I don’t mean to be flip about it. There absolutely exists the potential that genetic data can be misused by medical insurers or employers. But I take the view that we are living an era of technology in which more and more people are going to want to take advantage of the genetic aspects of technology to peer inside their DNA. There is already a law on the books – the Genetic Information Non-Discrimination Act. It’s imperfect, for sure, but I like to think that it’s gotten the conversation started about protecting genetic data.
article continues after advertisement
CL: You’re currently on a book tour for The Gene Machine, doubtless raising a host of issues many would prefer to leave to one side, especially outside a medical setting. How are you navigating such complex issues, and are you finding that discussion of them leaves your audiences reassured or prone to fear and anxiety?
BR: I’m finding that audiences are completely captivated by these discussions. At its heart, this book is about finding our shared humanity and about bioethics. When I speak to audiences, I try to really engage people in the complex science of genetics by presenting real-life scenarios, almost like case studies. I even give audiences ideas of ethical dilemmas they can hash over at their next cocktail party! That always draws a laugh, but in the Q & A sessions that follow my talks, I routinely get follow-up questions about some of the dilemmas I’ve raised and others I haven’t touched on. That says to me that people are neither reassured nor beset with worry but energized by thinking about all the ways that genetic tech is reshaping the human experience, specifically as it relates to pregnancy and parenting, but more broadly as well.
Bonnie Rochman, The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids—and the Kids We Have (Scientific American/FSG, 2017).
bonnierochman.com
Follow on Twitter @brochman
christopherlane.org
Follow on Twitter @christophlane
SHARE
TWEET
EMAIL
MORE
SHOWCOMMENT
About the Author
Christopher Lane, Ph.D.
Christopher Lane, Ph.D., has won a Prescrire Prize for Medical Writing and teaches at Northwestern University. He is the author of Shyness: How Normal Behavior Became a Sickness.
In Print: Shyness: How Normal Behavior Became a Sickness
Online: Christopher Lane — Author Website
YOU ARE READING
Side Effects
Pexels
The U.S. Is Not Doing Well Socially
The latest surveys point to signs of an unhappy, divided country.
Scientific American/FSG, 2017
The Gene Machine: An Interview with Bonnie Rochman
The expanding influence of genomics on our lives.
HarperPerennial 1951, rept. 2010
Fervor and Fanaticism
The parallels between Trumpism and other mass movements
See More Posts
advertisement
Most Popular
1
Trinity Kubassek
3 Signs You’re in a Bad Relationship2
Vasabii/Dreamstime (modified)
Low-Carbohydrate Diet Superior to Antipsychotic Medications3
CC0/Pixabay
3 Ways to Regulate Your Emotions4
iStock
How to Talk to Kids about Mass Shootings and Attacks5
Fotolia
How to Talk to Kids About the Las Vegas Shooting
advertisement
You Might Also Like
More Than Genes IV: Culture, Poverty, and Fetal Destruction
Genes and Autism: The Good, the Bad, and the Ugly
Sex Selection Game-Changer? New Fetal Gene Test Reveals Sex at 7 Weeks
The Dex Diaries, Part 4: A Perpetual Motion Machine of NIH Funding?
Public Support for "3-Parent," Genetically Modified Babies?
Facebook Twitter Google Plus
Psychology Today HealthProfs.com
Psychology Today © 1991-2017 Sussex Publishers, LLC | HealthProfs.com © 2002-2017 Sussex Directories, Inc.
About Privacy Policy Terms
10/3/2017 General OneFile - Saved Articles
http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MARK_LIST&userGroupName=schlager&inPS=true&prodId=ITOF&ts=1507064613053 1/3
Print Marked Items
Rochman, Bonnie: THE GENE MACHINE
Kirkus Reviews.
(Jan. 1, 2017):
COPYRIGHT 2017 Kirkus Media LLC
http://www.kirkusreviews.com/
Full Text:
Rochman, Bonnie THE GENE MACHINE Scientific American/Farrar, Straus and Giroux (Adult Nonfiction) $26.00 2,
28 ISBN: 978-0-374-16078-4
When scientific ability and human desire coalesce into a potent tool that can profoundly change life.As more research
is conducted on the human genetic code, scientists, doctors, and parents will have an increasing number of options
regarding how this information is used. Beginning with Tay-Sachs, a fatal neurological disease commonly found
among Ashkenazi Jews, former Time health and medicine columnist Rochman clearly discusses how genetic screening
has helped Jews avoid passing the disease on to their offspring. She also explores the multiple layers of morality and
ethics involved in the process of prenatal carrier screening. For those with a definite genetic predisposition to a lifethreatening
or deadly defect, the testing can provide answers while there is still time to discuss pregnancy or abortion.
But what are the options if a fetus is diagnosed with cystic fibrosis, Down syndrome, or a host of other abnormalities?
With the use of in vitro fertilization, doctors can implant only those embryos that show no signs of a genetic
abnormality, and parents are making decisions about their offspring based on these genetic tests. These are just some of
the difficult scenarios Rochman outlines in the narrative, which is full of interviews with doctors, parents, and those in
the scientific community. The author also examines the conflicts surrounding the knowledge of potential problems that
only manifest later in life, such as Alzheimer's disease--should parents be told their child is predisposed? For some
parents, the advance knowledge created a state of anxiety, inhibiting their ability to fully relax and enjoy the many
nonafflicted years their child had before them. Knowledge can be power, but as Rochman rightly points out, sometimes
the ability to know doesn't mean one should know. Solid research into the dilemmas regarding genetic screening and
how it is used for fetuses and newborns.
Source Citation (MLA 8th
Edition)
"Rochman, Bonnie: THE GENE MACHINE." Kirkus Reviews, 1 Jan. 2017. General OneFile,
go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA475357320&it=r&asid=129c5cebcecc37c7c7952ebd26e367fc.
Accessed 3 Oct. 2017.
Gale Document Number: GALE|A475357320
---
10/3/2017 General OneFile - Saved Articles
http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MARK_LIST&userGroupName=schlager&inPS=true&prodId=ITOF&ts=1507064613053 2/3
The Gene Machine: How Genetic Technologies
Are Changing the Way We Have Kids--and the
Kids We Have
Publishers Weekly.
264.2 (Jan. 9, 2017): p57.
COPYRIGHT 2017 PWxyz, LLC
http://www.publishersweekly.com/
Full Text:
* The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids--and the Kids We Have
Bonnie Rochman. Scientific American, $26 (288p) ISBN 978-0-374-16078-4
Journalist Rochman takes a calm, thorough, and nonsensationalist look at core bioethical questions surrounding an
array of reproductive health issues as well as the ethical spaces where what can be done and what should be done come
into conflict. She clearly and accessibly describes cutting-edge technologies for the general reader without succumbing
to faddish, uncritical enthusiasm. Rochman solicits the perspectives of doctors, researchers, legal experts, and families
in order to focus on humanist factors, such as how doctors should counsel, how having nonactionable information still
affects parental prerogatives, and whether people have a right to an "open future" in light of increasing access to
genetic testing. She digs into the toughest topics, including whether using screening results to vet potential quality-oflife
factors approaches a new eugenics, if people with such differences as genetic deafness should be able to select for a
child with that trait, if gene therapies that turn off genes for Down syndrome should be used on children, and whether
parents have a right to test their children and access their data concerning diseases that do not manifest until adulthood.
Rochman's thoughtful take highlights important issues for parenting in an increasingly high-information world. (Mar.)
Source Citation (MLA 8th
Edition)
"The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids--and the Kids We Have."
Publishers Weekly, 9 Jan. 2017, p. 57. General OneFile, go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA477339337&it=r&asid=dad2cc8bee4c123fb44c9c06ccf2959d.
Accessed 3 Oct. 2017.
Gale Document Number: GALE|A477339337
---
10/3/2017 General OneFile - Saved Articles
http://go.galegroup.com/ps/marklist.do?actionCmd=GET_MARK_LIST&userGroupName=schlager&inPS=true&prodId=ITOF&ts=1507064613053 3/3
Genetically speaking
Library Journal.
141.20 (Dec. 1, 2016): p120.
COPYRIGHT 2016 Library Journals, LLC. A wholly owned subsidiary of Media Source, Inc. No redistribution
permitted.
http://www.libraryjournal.com/
Full Text:
Kolata, Gina. Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them.
St. Martin's. Mar. 2017.272p. notes. ISBN 9781250064349. $25.99; ebk. ISBN 9781250123992. SCI
Kuru, an incurable genetic disease native to Papua New Guinea, finds its way to the Baxleys, a conservative Christian
family of doctors in smalltown South Carolina who battle kuru--a degenerative and deadly mix of Parkinson's and
Alzheimer's-- while trying to uncover its mysterious origin and possibly escape its fate. New York Times science and
medicine reporter Kolata (Rethinking Thin: The New Science of Weight Loss--and the Myths and Realities of Dieting)
dedicates the absorbing first half of this book to the parallel accounts of doctors investigating the mystifying disease
(neurologist Stanley Prusiner and physician Daniel Gajdusek would both win Nobel Prizes for their work) and the
Baxley family's struggle to understand and cope with its devastating effects. The narrative weakens in the second half,
when it narrows its focus to Amanda Baxley, whose determination to have children but not pass on the deadly gene
leads to a plodding medical journey. But the interweaving tales of science, family, and medical ethics make for a
compelling read. VERDICT Though at times the book adopts the tone of a Hallmark made-for-TV movie, its hopeful,
struggle-against-the-odds story will find a library audience. [See Prepub Alert, 9/19/16.1--Chad Comello, Morton
Grove P.L., IL
[ILLUSTRATION OMITTED]
Rochman, Bonnie. The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids--and the
Kids We Have. Farrar. Feb. 2017. 288p. notes, index. ISBN 9780374901455. $26. TECH
Journalist Rochman investigates the development of gene technologies and their effects on medicine, bioethics, and
family dynamics. New scanning technologies allow parents to know if their unborn child will be born with a disease,
which raises the question for parents of whether to terminate the pregnancy. Rochman examines preimplantation
diagnoses to prevent terminally ill children from being born, how Ashkenazi Jews beat Tay-Sachs disease through
carrier screening, and an open future that allows everyone to know everything about their genes. In addition, she
discusses the issues surrounding rare diseases and universal sequencing. She supports her arguments through extensive
interviews, sharing her personal stories and citing scholarly and popular sources. Readers will be left considering
genetic technology and the future and meaning of families. The author delves into an intriguing and intimate topic with
sensitivity and compassion. No prior science knowledge is necessary, as this book is written for a general audience.
VERDICT For anyone who has or will have children as well as those with an interest in genetics and popular science--
Tina Chan, MIT Libs., Cambridge
Source Citation (MLA 8th
Edition)
"Genetically speaking." Library Journal, 1 Dec. 2016, p. 120. General OneFile, go.galegroup.com/ps/i.do?
p=ITOF&sw=w&u=schlager&v=2.1&id=GALE%7CA472371300&it=r&asid=15082d56b6172e3d5e307e0c89fad4b5.
Accessed 3 Oct. 2017.
Gale Document Number: GALE|A472371300
SECTIONS HOME SEARCHSKIP TO CONTENTSKIP TO NAVIGATIONVIEW MOBILE VERSION
The New York Times
LOG IN SETTINGS
NONFICTION
In Masha Gessen’s ‘The Future Is History,’ Homo Sovieticus Rises
NONFICTION
When the Empress of India Met Her Muslim Teacher
FICTION
A Second Wife Haunted by the Shadow of Her Husband’s First
FICTION
In ‘Manhattan Beach,’ Jennifer Egan Sets a Crime Story on the...
MATCH BOOK
Illustrated Books to Help Children Embrace Their Differences
NONFICTION
A Trust Buster for the New ‘Knowledge Monopoly’
THE BOOK REVIEW PODCAST
Recent Romances
EDITORS' CHOICE
11 New Books We Recommend This Week
FICTION
In Alice McDermott’s Novel, A Cloistered Life Blows Open
FICTION
A Roundup of the Season’s Romance Novels
PROFILE
Ta-Nehisi Coates and the Making of a Public Intellectual
NONFICTION
A Writer’s Onward and Upward Path in 1980s New York
BY THE BOOK
Jennifer Egan: By the Book
PROFILE
The World According to Dan Brown
THE SHORTLIST
The Story of Louisa Alcott’s Baby Sister, and Other Characters From...
PAPERBACK ROW
Paperback Row
CRIME
The Latest and Greatest in Crime Fiction
INSIDE THE LIST
Gucci Mane’s Inspirational Guide to Self-Improvement (in Prison)
FICTION
An ‘Antigone’ for a Time of Terror
NONFICTION
Karl Ove Knausgaard’s Visions for His Daughter
Loading...
BOOK REVIEW
Advertisement
BOOK REVIEW | NONFICTION
Tinkers and Tailors: Three Books Look to the Biomedical Frontier
By EZEKIEL J. EMANUELMARCH 16, 2017
Continue reading the main storyShare This Page
Share
Tweet
Pin
Email
More
Save
Photo
Credit Eleni Kalorkoti
THE GENE MACHINE
How Genetic Technologies Are Changing the Way We Have Kids — and the Kids We Have
By Bonnie Rochman
272 pp. Scientific American/Farrar, Straus & Giroux. $26.
THE BODY BUILDERS
Inside the Science of the Engineered Human
By Adam Piore
376 pp. Ecco/HarperCollins Publishers. $26.99.
TO BE A MACHINE
Adventures Among Cyborgs, Utopians, Hackers, and the Futurists Solving the Modest Problem of Death
By Mark O’Connell
241 pp. Doubleday. $26.95.
Conventional wisdom has it that science is always outrunning our ethics, that new technologies overwhelm our ability to reason ethically and regulate breakthroughs. Should we permit — or require — whole genome sequencing of every infant? Should we promote radical life extension?
Continue reading the main story
Buy
The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids — and the Kids We Have
Bonnie Rochman
We earn an affiliate commission with each book purchase, which helps support our journalism at The New York Times.
Advertisement
Continue reading the main story
In 1975, Paul Berg, a Stanford biochemistry professor, convened what came to be known as the Asilomar Conference to establish safeguards and prohibitions on the conduct of what then was cutting-edge biomedical research — recombinant DNA technology. Many people were worried that it could create bacteria with foreign DNA that might escape the laboratory, causing cancer in people or disrupting the Earth’s ecosystem. Today, Asilomar stands for one of the seminal moments in history when scientists and physicians showed what one scientist called “social responsibility in the face of strong intellectual temptation” to continue experiments. In the view of many, the conference succeeded only because Berg and other organizers focused on safety.
In subsequent years, it has become clear that safety is the only shared value that might pause the pursuit of biomedical research. Yet, as the three books under review illustrate, today’s big ethical issues in biomedicine are not about safety but often more profound questions of parental control over their children’s future; personal identity; and the importance of mortality to being human. And yet these books — and much of American culture — have a hard time engaging with these fundamental questions.
Photo
In “The Gene Machine,” the journalist Bonnie Rochman explores a range of genetic tests from carrier screening to whole genome sequencing. “I am an information junkie,” she writes, and because of this predilection, she has a hard time explaining what might be called Huntington’s paradox: Before the gene for Huntington’s disease was found, about three-quarters of at-risk people wanted to know their genetic status. But after a test became available, only 25 percent wanted to know. In the abstract, more information always seems desirable. In reality, not so much. Why? Maybe because being able to imagine hopeful paths seems to be hard-wired. For most people, genetic tests that predict the future, especially when there is no intervention, provide oppressive, not liberating, information.
Rochman explains all manner of genetic tests, but don’t expect much enlightenment on the ethics. Many arguments are delineated by juxtaposing quotations from experts without any critical assessment of their merits. Are children really entitled to an “open future,” and what does it actually entail from parents in terms of genetics? Instead of a deep analysis, Rochman flippantly writes: “In actuality, no one’s future is truly wide open; everyone is made up of genes, and genes contain the imprint of generations past.” True, but surely there is much more to say about degrees of openness and how genetics might or might not fit into those different conceptions. The “openness” of futures for children born into closed Hasidic, Amish or strict Muslim communities is different from children born into typical Upper West Side households. And that qualitative difference makes a big ethical difference. Rochman never goes there.
Photo
While Rochman acknowledges the ethical issues at the heart of genetic screening, Adam Piore dismisses all such concerns. In “The Body Builders,” he explores the creation of artificial limbs, memory-enhancing drugs and deep brain stimulation to help people who have medical problems. The stories are engaging, and some are even engrossing, but Piore seems a bit too admiring of his scientists and indifferent to any concerns. He is so enamored with the power of deep brain stimulation that when the F.D.A. required a randomized, placebo-controlled study of its use in depression — which revealed no benefit — he simply dismisses the problem by quoting a researcher as saying: “We ended up having a fairly high placebo effect. . . . But it definitely worked in some people.” And then Piore confidently predicts advanced technology will solve the problem.
By his own admission, Piore is mesmerized by new technologies and unfazed by any larger concerns such as the ethics of enhancement and whether these technologies might be available only to the well-off. On the last page of the book, he simply says without any argument: “I am skeptical that technology will ever fundamentally transform us. . . . The most important story is the one about enhancing not our abilities, but our humanity.” This is not the end of an argument. It is just an assertion that seems to border on willful avoidance of any deep thinking about the influences of technology on people and society.
Photo
“To Be a Machine” is Mark O’Connell’s gonzo-journalistic exploration of the Silicon Valley techno-utopians’ pursuit of escaping the body and ultimately mortality. Titans of technology — Peter Thiel, Larry Page, Sergey Brin and others — are obsessed by the desire for immortality, and their fixation leads them to pursue a host of science projects: uploading the brain’s contents into computers, cryopreservation, radical life extension.
We meet a multitude of colorful characters: Aubrey de Grey, with his two-foot beard, who runs the nonprofit SENS Research Foundation (SENS stands for Strategies for Engineered Negligible Senescence) dedicated to finding a way for people to live to 1,000 and then avoid death altogether; Max More, the proprietor of Alcor, a cryopreservation facility in Phoenix that for $80,000 will detach and store your head in “medical-grade antifreeze” — after you die, of course — “with a view to the later uploading of your brain, or your mind, into some kind of artificial body.”
The book is a wonderful, breezy romp filled with the beginnings of philosophical reflections on the meaning of the techno-utopians’ search for immortality, or as O’Connell puts it, “solving death.” He notes that underlying their view is a techno-mechanistic view of humans as simply “meat machines” that process information — information that can be extracted and exported to a computer or silicon-based robot.
But while O’Connell suggestively quotes Rilke, St. Augustine, Gnostic texts and Hannah Arendt in critiquing techno-utopians, he never goes very deep into understanding the pathology driving them. He feels no attraction to their philosophy and notes that his child playing horsy with his wife could not be “rendered in code. . . . Their beauty was bodily, in the most profound sense, in the saddest and most wonderful sense.” But he fails to translate that feeling into anything approaching a coherent social or ethical critique. This limitation may be most manifest in O’Connell’s failure to mention one of the most disturbing aspects of this immortality mania: its utter selfishness. If Thiel and others actually succeeded in achieving superlong lives, then reproduction would end. And with it, the possibility of creating new people with novel characteristics and perspectives. Life would become one long, boring rerun.
It would not, as one of O’Connell’s characters thoughtlessly says, be because childbirth would become “a thing of the past, . . . with babies being produced by ectogenesis and whatnot.” It would be because with all those old Peter Thiels living on and on forever, the Earth would lack the carrying capacity for more people; there would be total resource limits precluding adding one more infant, much less the 130 million currently added each year. Maybe this is why the titans of technology want so badly to escape to Mars.
Ezekiel J. Emanuel is chairman of the department of medical ethics and health policy at the University of Pennsylvania and author of the forthcoming “Prescription for the Future.”
A version of this review appears in print on March 19, 2017, on Page BR17 of the Sunday Book Review with the headline: Tinkers and Tailors. Today's Paper|Subscribe
Continue reading the main story
FROM OUR ADVERTISERS
TRENDING
Live Briefing: Las Vegas Shooting: Gunman’s Rifle Had ‘Bump Stock’ to Make It Rapid-Fire Weapon
Trump, in Puerto Rico, Compares Death Toll With ‘Real Catastrophe,’ Katrina’s
The Las Vegas Massacre: Shots, Chaos and a Frantic Search for a Gunman
Kennedy’s Vote Is in Play on Voting Maps Warped by Politics
The Las Vegas Victims: Their Families Tell Their Stories
Tom Petty, a Mainstay of Rock With the Heartbreakers, Dies at 66
Op-Ed Columnist: If Only Stephen Paddock Were a Muslim
Stephen Paddock, Las Vegas Suspect, Was a Gambler Who Drew Little Attention
Op-Ed Contributor: Rosanne Cash: Country Musicians, Stand Up to the N.R.A.
Best of Late Night: Jimmy Kimmel Seizes On Las Vegas Shooting to Champion Gun Laws in Emotional Monologue
View More Trending Stories »
What's Next
Loading...
Go to Home Page »
SITE INDEX THE NEW YORK TIMES
Site Index Navigation
NEWS
World
U.S.
Politics
N.Y.
Business
Tech
Science
Health
Sports
Education
Obituaries
Today's Paper
Corrections
OPINION
Today's Opinion
Op-Ed Columnists
Editorials
Op-Ed Contributors
Letters
Sunday Review
Video: Opinion
ARTS
Today's Arts
Art & Design
Books
Dance
Movies
Music
N.Y.C. Events Guide
Television
Theater
Video: Arts
LIVING
Automobiles
Crossword
Food
Education
Fashion & Style
Health
Jobs
Magazine
N.Y.C. Events Guide
Real Estate
T Magazine
Travel
Weddings & Celebrations
LISTINGS & MORE
Reader Center
Classifieds
Tools & Services
N.Y.C. Events Guide
Multimedia
Photography
Video
NYT Store
Times Journeys
Subscribe
Manage My Account
NYTCo
SUBSCRIBE
Home Delivery
Digital Subscriptions
Crossword
Email Newsletters
Alerts
Gift Subscriptions
Corporate Subscriptions
Education Rate
Mobile Applications
Replica Edition
Site Information Navigation
© 2017 The New York Times Company HomeSearchAccessibility concerns? Email us at accessibility@nytimes.com. We would love to hear from you.Contact UsWork With UsAdvertiseYour Ad ChoicesPrivacyTerms of ServiceTerms of SaleSite Information Navigation
Site MapHelpSite FeedbackSubscriptions Go to the next story
0
ARTICLES REMAINING
Subscribe to The Times. Score the gift of a Google Home.
SEE MY OPTIONS Subscriber login
Hear what journalism sounds like.
Subscribe to The Times.
Score the gift of a Google Home.
SEE MY OPTIONS
0 articles remaining this month
Already a subscriber? Log in
Bonnie Rochman's The Gene Machine and Mark O'Connell's To Be a Machine, reviewed:
Two new books, The Gene Machine and To Be A Machine, revolve around the basic question of what technology is supposed to do
NAVNEET ALANG
Special to The Globe and Mail
March 24, 2017
February 24, 2017
The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids – and the Kids We Have
By Bonnie Rochman
Scientific American/Farrar, Straus and Giroux, 288 pages, $37
To Be A Machine: Adventures Among Cyborgs, Utopians, Hackers, and the Futurists Solving the Modest Problem of Death
By Mark O'Connell
Doubleday, 241 pages, $35.95
Mark Zuckerberg wants to reshape the world. At least that's the vision the Facebook co-founder outlined in a recent 6,000-word manifesto about how the company intends to navigate these strange, perhaps historic times. Zuckerberg wrote about his desire to build a global community in the face of increasing polarization and to do something about the ideological bubbles that, thanks to social media, may have contributed to the rise of Donald Trump and the resurgence of racist, fascist and white-supremacist ideologies.
But the notion that Facebook had a role to play at all in last year's U.S. election points to just how quickly and significantly the social network has become powerful. As New York Times media critic John Herrmann noted on Twitter, one "can't help but see the words 'THE PLATFORM IS THE NEW STATE' flashing between every paragraph."
The idea being that Facebook's ultimate goal isn't simply a better social network, but something as far-ranging as a new kind of geopolitical organization.
Such high-flying ideas have become de rigueur in Silicon Valley. PayPal founder and early Facebook investor Peter Thiel once wanted to build a libertarian island off the U.S. West Coast. Tesla chief executive Elon Musk wants to do everything from digging traffic-alleviating tunnels under Los Angeles to sending humans to Mars. Perhaps it's unsurprising that the techno-utopian tenor of our age is now also found in the two things that bookmark our lives: birth and death. On the one end, is the promise of genetic sequencing and screening that may radically alter health and child-rearing; on the other, are those trying to cheat that most fundamental, unifying human phenomenon: mortality.
Story continues below advertisement
Those are the topics of Bonnie Rochman's The Gene Machine, which investigates both the promise and threat of genetic screening in babies, and Mark O'Connell's To Be a Machine, which sets its sights on transhumanism, a movement that seeks to meld technology and the body – and even do away with the body altogether. Even if those ideas conjure a shudder in some deep part of your soul, they nonetheless each revolve around the basic question of what technology is supposed to do. When tinkering with the very basic ideas about existence, however, it's also worth asking: where does technology end and the human begin?
As we've hurtled headlong into the digital era, turning phones into extensions of ourselves, techno-utopianism has found its inverse in techno-skepticism – in authors such as Evgeny Morozov, Doug Rushkoff and journalists including Sam Biddle or Sarah Jeong, who ask if technology is actually improving life, and for whom. "Don't you see," goes the line of the techno-skeptic, "how this is all leading us down the wrong path?"
Yet, Rochman's text in particular serves as a reminder that tech is at its most (literally) vital when focused on the question of suffering. The Gene Machine tries to answer the questions raised now that we are gaining the ability to not just recognize genetic conditions in the womb, but also prevent, or even fix them, in utero. One example: Tay-Sachs is a disease that results in slow nerve degeneration in babies, with the vast majority of sufferers not living past the age of four. The implementation of a comprehensive screening program, however, means the disease can be recognized in fetuses, offering the choice of an abortion to prevent what would otherwise objectively be a brutal, cruelly short life.
The same techniques that allow a person's genes to be mapped, however, also allow for uncovering less black-and-white conditions – among them, the BRCA1 mutation, made famous by Angelina Jolie, which radically increases the chance of breast and ovarian cancer. While that may seem like an unequivocal good, the fact that gene-carriers have a 50-per-cent chance of developing the disease raises a complicated set of questions: Do genetic counsellors tell young children or adolescents if they have the mutation, leaving the spectre of cancer to loom above their lives? Or not? Making matters more complicated is that current genetic techniques can detail many mutations or missing genes, but not what the precise effect will be. A standard genetic sequence will reveal no end of ambiguous data, as in Rochman's tale of Daniel, a four-year-old boy whose parents were informed of a genetic anomaly but not what the consequences might be. They have spent the length of his short life racked with anxiety, hovering over their child, wishing no one had ever told them.
The genetic revolution has thus led to the strange scenario in which we have too much information and that somehow still isn't enough – which is about as fitting a description of our era as you'll find. Mark O'Connell, in funny, reflective prose, finds in the transhumanists a desire to exceed these very limits – of the capacity for thought, of death, of the body. Travelling across America, the Irish writer encounters a slew of oddball characters, many of them blisteringly intelligent, whom all wish to collapse the distinction between person and machine. Some wish to augment human intelligence with implants, while others have already implanted sensors in themselves (without anesthetic). Some wish to cheat death by either cryogenically freezing people with a plan to reanimate them at some future point, or by reversing aging; others wish to escape bodies entirely by uploading human consciousness to a network or into a robot.
If it all sounds far-fetched, that's because it mostly is. While bionic limbs and auditory or even ocular implants are either here or coming soon, increasing intelligence or putting a mind into a microchip may well be impossible. As O'Connell argues, in trying to escape the limits of bodies, transhumanists return to an old type of thinking: the Cartesian idea that the mind and body are in fact distinct things.
But trying to replicate those things gets down to deep questions about what consciousness is. Perhaps like space and time, consciousness and the body are inextricably connected things – that what it means to be a self might be as much physical as mental. Ironically, though, as O'Connell points out, in that sense transhumanism is likely a modern substitute for religious faith, a solution to a kind of simmering unease. Presented with the crushing agony of mortality, the transhumanist, rather than superseding old patterns of thought, seeks out salvation in a steel or silicon deity. Each man's story (they are unfailingly men) presents some trauma or failing – a near brush with death; alcoholism; lifelong virginity – and each seeks redemption in a post-human future where addiction, the messy sociality of sex, or the simple fact that we're all going to die, evaporate in a fantasy of annihilation, the desire for immortality manifested in a strange version of the death drive. The image of a mind without a body is, rather than a vision of transcendence, a desire for a final nothingness.
Cast in this light, the wild fantasies of Zuckerberg, Thiel or Musk (again, all men) don't seem so much high-flying as naive, seeking out childish chimeras of the future that have little to do with the gritty reality of politics or feeding people or preventing sharp inequality. But where these men differ from, say, someone such as Zoltan Istvan – featured in To Be a Machine, and who ran for U.S. president in 2016 on an immorality platform by driving a broken Winnebago around the country – is that today's tech scions hold an immense, almost worrying power that also needs to be held to account for both its immense effect on our lives and their wildly unrealistic goals.
For those reasons and more, both Rochman and O'Connell are skeptical of our most recent technological turn – the former in careful, judicious weighing of the pros and cons of genetic tech; the latter in a funnier, more profane, and a more philosophical, ultimately more readable text on what drives transhumanism.
But in each there is a sense that there is something if not pure exactly, then irreducible about being human – a thing that might somehow be lost irrevocably by the intrusion of too much technology.
It is a common thought. Yet, there is another case to be made here: That lingering under each of these arguments is the notion that technology and humanity are not distinct ideas, but are in fact coterminous. It's the idea of the techno-subject, the notion that all the things that make us human – at their most basic, language, and the manipulation of our environment and ourselves – are in fact technological. Rather than being two separate things, like space and time and the body and consciousness, technology and the human are two different sides of the same coin. As such, presented with an era of almost unimaginable change, the question is never really "how much technology is enough?" – but instead, at each new epoch, something altogether more difficult: that if technology is who we are, then what are we to do with ourselves now that who we are is forever changed?
Navneet Alang is a technology and culture writer based in Toronto.
Thursday, September 7, 2017
Rhiannon Johnson
Review:: The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids--and the Kids We Have
Rhiannon Johnson
Review:: The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids--and the Kids We Have
THE GENE MACHINE: How Genetic Technologies Are Changing the Way We Have Kids--and the Kids We Have by Bonnie Rochman
Released: February 28, 2017 from Scientific American / Farrar, Straus, Giroux
Goodreads Summary:
A sharp-eyed guide to the promise and peril of having children in an age of genetic tests and interventions. Is DNA testing a triumph of modern medicine or a Pandora’s box of possibilities? Is screening for disease in an embryo a humane form of family planning or a slippery slope toward eugenics? And, more practically, how do we navigate the dizzying and expanding array of tests available, with more appearing every day? In The Gene Machine, the award-winning journalist Bonnie Rochman addresses these questions and more, guiding us through the new frontiers of gene technology and how it has forever changed medicine, bioethics, and the factors that shape a family. Rochman takes an authoritative look at the latest hot-button issues in the world of pre- and postnatal testing and tells the stories of women and men struggling to understand the variety of tests and grappling with their results—revelations that are sometimes joyous, sometimes heartbreaking, and often profound. Propelled by human narratives and meticulously reported, The Gene Machine introduces us to scientists working to unlock the secrets of the human genome; gene counselors and spiritual advisers helping parents manage this complex new reality; and, of course, parents themselves, including the author, who glimpse the genetic futures of their children. The Gene Machine is both a scientific road map and a meditation on our power to shape the future, one that gets to the very core of what it means to be human.
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.
Comments (3)
Rhiannon Johnson 8:46 AM
You May Also Like
3 comments
Bonnie said...
Thank you for reviewing The Gene Machine! Sorry you missed my talk in Decatur but glad you enjoyed the book.
September 10, 2017 at 9:43 AM
Judy Krueger said...
I will have to read this. I never studied genetics but always wished I had. I look forward to your reviews of other books you read on the topic!
September 10, 2017 at 4:06 PM
Rhiannon Johnson said...
Thank YOU for writing such a great book Bonnie! Judy, I want to read THE GENE by Siddhartha Mukherjee soon, but it's a doorstopper!
September 13, 2017 at 8:53 AM
Post a Comment
Newer Post Older Post Home
Never Miss a Post: Subscribe Here
Pages
Home
Review Policy
Search This Blog
About Me
About Me Hi! I'm Rhiannon Johnson. I love reading contemporary fiction with strong female characters. I especially love the topics of reproduction and genetics (twins, mutations, heredity), witches/witchcraft, magic realism, and just about any novel set in Paris. Connect with me through some other platforms (below)
Molecular Machinations
Review by Evelyn Litwinoff
Publisher
Farrar, Straus and Giroux
Year
2017
Pages
288 pages
List Price
$26.00
Links
Amazon, IndieBound
The Gene Machine
How Genetic Technologies Are Changing The Way We Have Kids -- And The Kids We Have
Book by Bonnie Rochman
It’s easier than ever to sequence your genome. For as little as ninety-nine bucks, companies like 23andMe mail you a plastic vial for you to spit in, sequence your DNA, and send you the results. From that half teaspoon of saliva, you can learn the ethnicities of your ancestors, and what diseases you might develop. Do you live your life differently knowing more about where you came from, or that you may get sick some day in the future?
What if you know that a fetus, ninety days after conception, has a risk of developing disease? Genetic testing, now commonplace in OB/GYN offices, gives parents access to a wealth of information — but there is often not enough scientific knowledge or guidance to help parents understand what that information means. As journalist and parent Bonnie Rochman puts it in her informative but maddeningly unstructured and neutral new book The Gene Machine, having “access to more information can enlighten and confuse.”
Rochman has been reporting on the intersection of genetics, parenting, and pediatrics for Time and other well-known publications since 2011, and has herself struggled with the results of her own children’s genetic testing. Following an unusual ultrasound, Rochman agreed to test her third child for trisomy 18, an abnormality involving an extra copy of chromosome 18. The test results came back negative, but also uncovered a different DNA irregularity known as an “inversion.” Although the lab assured her that there are no illnesses known to be associated with this inversion, Rochman couldn’t resist paging “Dr. Google,” which led her to an obscure online article that linked this abnormality to schizophrenia. Now whenever her toddler throws a tantrum, Rochman wonders if it’s because of the genetic abnormality… or because she’s two years old. Her experience with testing-induced anxiety highlights the challenge of our new genetic age: How do we deal with the gap between a possible future and a certain one?
All any parent wants is a healthy, happy baby — and new genetic technologies have expanded our ability to guarantee this will be the case. We can screen for genetic diseases before, during, and after pregnancy. We can pick embryos free of known genetic abnormalities to get a healthy baby from the start. And with the new gene-editing technology called CRISPR, we may even be able to repair our children’s DNA after birth. The first step in gene editing of a human embryo was reported just this month [August 2017].
The Gene Machine uses a series of anecdotes to explore the ethical questions that arise with the expanding use of these technologies. For better and for worse, Rochman remains neutral, letting the stories she tells unfold with little comment, thus allowing readers to form their own opinions. As she admits in the introduction, “This book is not about right or wrong answers, only extremely personal and intimate calculations.” As a scientist myself, I appreciate Rochman’s attempt to let the information stand on its own, but I found myself wanting to know her take on the issues she presents, especially since we know she herself has struggled with genetic-information overload.
Ethical questions regarding the use of genetic screening are easy to answer when dealing with lethal diseases, but in the case of genes associated with only a risk of disease, the ethical issues become more complex. Virtually no one questions using genetic technologies to prevent a child from being born with Tay-Sachs, a disease that destroys brain cells and inevitably results in death in the first three years of life. In this case, genetic screening can be used to give parents options, such as choosing between adoption, abortion, or selecting healthy embryos to be implanted by in vitro fertilization (a new technology called preimplantation genetic diagnosis or PGD). But is it ethical to use PGD to weed out embryos bearing a mutation, BRCA1, that associated only with an increased risk of developing breast cancer? Not according to the participants of a study conducted by researchers in Florida addressing attitudes towards PGD. “They said, ‘This is not a death sentence. I had breast cancer and I survived.’ ”
Rochman circles around these questions, diseases, and technologies, thoroughly considering all the ethical and economic issues surrounding them, but confusing the hell out of the reader at the same time. When discussing PGD, for example, she begins by comparing stories from mothers and daughters with a BRCA1 mutation to see if they would use this technology to prevent passing the risk of breast cancer to their children. Jennifer Davis would do it in a heartbeat, but if her mother had used this technology (had it been available at the time), Davis herself wouldn’t be here today. But then the chapter evolves into a discussion of designer babies. If you can use PGD to prevent disease or risk of disease, is it ethical to use it to prevent disability? And while she’s talking about preventing disabilities, what about the parents who want their children to share the same disability they have, such as deafness? The chapter ends with a discussion about disabilities and abortion, abortion being the subject of the following chapter. The transitions from one fascinating topic to another read beautifully; at no point does the reader feel like Rochman has left them hanging on a cliff. And yet it’s extremely difficult to remember exactly how you got to any one particular topic. The writing often resembles a stream of consciousness more than a linear story.
To avoid the confusion Rochman causes with a lack of an obvious structure, I would suggest reading the introduction, and then skipping ahead to the middle of the book. The chapter entitled, “What Do Parents Want to Know?” nimbly conveys the anxiety parents experience from the results of genetic testing, as in the case of Maya Hewitt. Hewitt’s son Daniel failed his newborn hearing test, but his doctors could not find any physical reason for it. So Daniel was tested for genetic abnormalities related to hearing loss, using a method called chromosomal microarray. The good news: the results revealed there were no hearing-associated genetic defects. The bad news: since microarrays scan the entire genome, Daniel’s doctors did find a deletion in a different gene that may or may not lead to life-threatening illnesses later in life. Hewitt felt “blindsided that there was anything beyond the hearing loss, let alone something that sounded so treacherous.”
These anxieties seamlessly lead into the next chapter, “The Right to an Open Future.” Should our children know they have a mutation that increases the risk of a disease that they may or may not develop as adults? Would this knowledge cause undue anxiety, casting a shadow over their entire lives? Jonathan Berg, a geneticist at the University of North Carolina at Chapel Hill, believes genetic results should be divided into four categories: “ ’childhood onset’ conditions, childhood onset conditions that have no treatment or cure, adult-onset conditions that can be treated or mitigated, and adult-onset conditions that have no treatment or cure.” Childhood onset conditions with treatments, Berg argues, should be conveyed to parents automatically. Parents, however, should be given the option to choose to learn if their child has a disease with no treatment or cure available. Once children turn 18, they could request the results of the adult onset conditions. This system would present a neat solution to a problem Rochman rightly identifies. “While some parents wrestle with unwelcome genetic information,” she notes, “those who’ve long been tormented by an absence of answers are often grateful for any and all knowledge.” I found this nuanced answer to be smart and satisfactory; I just wish Rochman would be willing to say so, too.
Rochman’s clear descriptions of the basics and complexities of our DNA and genes make the book worth reading, especially for parents or couples trying to conceive, as it gives them a cautionary overview of the kinds of dilemmas they may encounter in the doctor’s office. As a prospective parent, I think it’s important to consider what information I want to know about my children as it pertains to their health, especially when that information may only increase my anxieties — and I wish Rochman had let us in on what conclusions she drew for her own family. An informative but steadfastly neutral primer, The Gene Machine leaves readers to make their own choice.
Evelyn Litwinoff has a BA in Molecular Biology and Biochemistry, an MS in Pathology, and is about to complete her PhD in Biomedical Sciences. She is an avid follower of parenting writings and blogs, and hopes to become a mother herself someday soon.
The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids – and the Kids We Have
Posted on March 20, 2017
The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids – and the Kids We Have by Bonnie Rochman
Synopsis: A sharp-eyed exploration of the promise and peril of having children in an age of genetic tests and interventions.
Is 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 quandary: 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.
Published: February 2017 | ISBN: 978-0374160784
Author’s Homepage: http://www.bonnierochman.com
Author’s Twitter: https://twitter.com/brochman
Kirkus Reviews Book Review
Publishers Weekly Book Review
The Globe and Mail Book Review
New York Times Book Review
Amazon Associates (SBAD gets a % of sales from books sold via these links, to help us do more work for science books)
Hardcover Edition: The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids–and the Kids We Have
Kindle Edition: The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids–and the Kids We Have
Advertisements