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Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in th Future of the Gene
In 2004 genetic testing revealed that Masha Gessen had a mutation that predisposed her to ovarian and breast cancer. The discovery initiated Gessen into a club of sorts: the small (but exponentially expanding) group of people in possession of a new and different way of knowing themselves through what is inscribed in the strands of their DNA. As she wrestled with a wrenching personal decision—what to do with such knowledge—Gessen explored the landscape of this brave new world, speaking with others like her and with experts including medical researchers, historians, and religious thinkers. Blood Matters is a much-needed field guide to this unfamiliar and unsettling territory. It explores the way genetic information is shaping the decisions we make, not only about our physical and emotional health but about whom we marry, the children we bear, even the personality traits we long to have. And it helps us come to terms with the radical transformation that genetic information is engineering in our most basic sense of who we are and what we might become.
321 pages, Hardcover
First published April 1, 2008
27 people are currently reading
703 people want to read
About the author
Masha Gessen
29 books1,297 followersMasha Gessen (born 1967) is an American-Russian journalist, translator, and nonfiction author. They identify as non-binary and use they/them pronouns.
Born into an Ashkenazi Jewish family in Russia, in 1981 they moved with their family to the United States to escape anti-Semitism. They returned in 1991 to Moscow, where they worked as a journalist, and covered Russian military activities during the Chechen Wars. In 2013, they were publicly threatened by prominent Russian politicians for their political activism and were forced to leave Russia for the United States.
They write in both Russian and English, and has contributed to The New Republic, New Statesman, Granta and Slate. Gessen is a staff writer at The New Yorker, covering international politics, Russia, LGBT rights, and gender issues.
Born into an Ashkenazi Jewish family in Russia, in 1981 they moved with their family to the United States to escape anti-Semitism. They returned in 1991 to Moscow, where they worked as a journalist, and covered Russian military activities during the Chechen Wars. In 2013, they were publicly threatened by prominent Russian politicians for their political activism and were forced to leave Russia for the United States.
They write in both Russian and English, and has contributed to The New Republic, New Statesman, Granta and Slate. Gessen is a staff writer at The New Yorker, covering international politics, Russia, LGBT rights, and gender issues.
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Displaying 1 - 28 of 28 reviews
September 26, 2011
From the synopsis you may think this is a book about how the author deals with being diagnosed with breast cancer, and not much more. However there is so much more to it. Clearly well researched this is an easily accessible book on genetics and it's influence on human disease. A must read for anyone with an interest in genetics.
March 9, 2023
3.5 stars
April 19, 2008
Blood Matters is a thin volume packed with information on recent advances in the science of genetics told in a very personal manner. Masha Gessen was inspired to write Blood Matters after learning she had a mutation that increases her risk of breast and ovarian cancers.
In the first chapter when Gessen is recounting her mother's death and her own fears about breast cancer I was reluctant to keep reading. I was afraid the book would be nothing more than a gnashing of teeth and self pity. Fortunately after introducing the reason behind the book Gessen gets on to the science and her own process of learning about it.
Blood Matters is broken into three parts: The Past, The Present and The Future. In the first part, Gessen places herself in the context of genetic science both as a potential cancer sufferer and as an Ashkenazi Jew. In the second part she looks at how genetic testing is being used now in mainstream healthcare and by certain communities. In the final part she wraps up with where the science of genetics is going and who is driving these advances.
As this is a memoir and a layman's introduction to genetics and the human genome, I am reminded fondly of Laura Gould's book on calico genetics, Cats Are Not Peas. I actually ended up enjoying the book so much that I will probably get myself a copy to keep as reference material, right next to my copy of Cats Are Not Peas.
In the first chapter when Gessen is recounting her mother's death and her own fears about breast cancer I was reluctant to keep reading. I was afraid the book would be nothing more than a gnashing of teeth and self pity. Fortunately after introducing the reason behind the book Gessen gets on to the science and her own process of learning about it.
Blood Matters is broken into three parts: The Past, The Present and The Future. In the first part, Gessen places herself in the context of genetic science both as a potential cancer sufferer and as an Ashkenazi Jew. In the second part she looks at how genetic testing is being used now in mainstream healthcare and by certain communities. In the final part she wraps up with where the science of genetics is going and who is driving these advances.
As this is a memoir and a layman's introduction to genetics and the human genome, I am reminded fondly of Laura Gould's book on calico genetics, Cats Are Not Peas. I actually ended up enjoying the book so much that I will probably get myself a copy to keep as reference material, right next to my copy of Cats Are Not Peas.
August 29, 2008
intersting tangents on genetics, from a russian lesbian whod had breast cancer and also is a really into it investigative reasearcher so she takes us into a lot of russian and jewish genetic places /research/philosophical dilemas/etc. not exactly a novel, but for me it was cool.
July 11, 2017
Masha Gessen is a journalist of Ashkenazi jewish ancestry with a BRCA gene mutation that meant she watched her mother die of cancer and her statistical probability of getting ovarian or breast cancer was quite high. So she investigated the ways different populations with high hereditary instances of certain diseases deal with trying to control the diseases but still remain on an ethical/moral straight path.
The book takes a look not only at BRCA gene counseling in the U.S., but also a company that Hasidic Jews send potential marriage mate blood samples to in order to find out if recessive diseases like Tay-Sachs are a possibility, populations in the U.S. with high instances of the dominant, degenerative Huntington's disease, and also Amish and Old Order Mennonite populations whose babies die young from Maple Syrup Disease (and enzyme issue), amongst others.
All the way through, Gessen provides a singular, embedded viewpoint filtering what she learns through her how journey of deciding how to handle the news of her own BRCA mutation. Should she do preventive surgery? Vigilant maintenance? What did this mean for the rest of her family?
At time, Gessen writes things from a viewpoint that I didn't agree with. Sometimes they were health related things not really connected to her main questions about genetics, like in her quick survey of the history of eugenics in the U.S.:
"Cigarettes, doctors reluctantly will tell you, are dangerous only when consumed in large doses: Very light smokers can have the pleasure without the risk of lung cancer."
Sometimes its her wry voice coming through in the way she calls herself a mutant (because of the BRCA) throughout the book that seems a tad too self-servingly deprecating.
And sometimes she is waxes poetically eloquent, like here when she is talking about Dor Yeshorim's testing of potential marriage mates:
"God provides the spirit, the soul, the beauty of features, the sight of the eyes...One might conclude that where a child is deprived of sight, hearing, speech, movement, understanding, and discernment-- as children with Tay-Sachs, Canavan, and Niemann-Pick certainly are-- God had declined to do His part. Dor Yeshorim's testing provides a peek to which couples will have these God-forsaken children."
I won't spoil the book by telling you what she decides to do in response to her own BRCA mutation. That is a journey worth taking with her through this book, finding out what she finds out, mulling over possibilities and consequences with her.
And with stem-cell debate and religion mixed up in genetics in the U.S., it's well worth reading and realizing about what individuals such as the doctor in the book ministering to the Old Order Mennonites in Pennsylvania and small organizations like Dor Yeshorim are doing already in influencing human genetics.
The book takes a look not only at BRCA gene counseling in the U.S., but also a company that Hasidic Jews send potential marriage mate blood samples to in order to find out if recessive diseases like Tay-Sachs are a possibility, populations in the U.S. with high instances of the dominant, degenerative Huntington's disease, and also Amish and Old Order Mennonite populations whose babies die young from Maple Syrup Disease (and enzyme issue), amongst others.
All the way through, Gessen provides a singular, embedded viewpoint filtering what she learns through her how journey of deciding how to handle the news of her own BRCA mutation. Should she do preventive surgery? Vigilant maintenance? What did this mean for the rest of her family?
At time, Gessen writes things from a viewpoint that I didn't agree with. Sometimes they were health related things not really connected to her main questions about genetics, like in her quick survey of the history of eugenics in the U.S.:
"Cigarettes, doctors reluctantly will tell you, are dangerous only when consumed in large doses: Very light smokers can have the pleasure without the risk of lung cancer."
Sometimes its her wry voice coming through in the way she calls herself a mutant (because of the BRCA) throughout the book that seems a tad too self-servingly deprecating.
And sometimes she is waxes poetically eloquent, like here when she is talking about Dor Yeshorim's testing of potential marriage mates:
"God provides the spirit, the soul, the beauty of features, the sight of the eyes...One might conclude that where a child is deprived of sight, hearing, speech, movement, understanding, and discernment-- as children with Tay-Sachs, Canavan, and Niemann-Pick certainly are-- God had declined to do His part. Dor Yeshorim's testing provides a peek to which couples will have these God-forsaken children."
I won't spoil the book by telling you what she decides to do in response to her own BRCA mutation. That is a journey worth taking with her through this book, finding out what she finds out, mulling over possibilities and consequences with her.
And with stem-cell debate and religion mixed up in genetics in the U.S., it's well worth reading and realizing about what individuals such as the doctor in the book ministering to the Old Order Mennonites in Pennsylvania and small organizations like Dor Yeshorim are doing already in influencing human genetics.
September 27, 2018
Very interesting. A little disjointed though. Starts as a memoir and cycled through history and the innovations in genetic medicine. However, I struggled at times with how it all fit into the authors story. I understand her wanting to make it personal but it somehow took away from the rest of the great background she provided. Just my opinion of course.
August 13, 2024
Oftentimes scientific books focus of the novelty and process of an invention, yet, this novel focuses more on the consequences of information. I enjoyed having to consider what having the key to genetic code changes about your decision making. The author does a lovely job of combining both statistics, personal tales, and views from many experts from geneticists to psychologists to everyday people when it comes to making decisions based on your genetic information. It frames the bioethical debate we will all be having as this type of technology develops.
July 19, 2008
Masha Gessen, a journalist in her late thirties, discovers through genetic testing that she carries a gene that makes her likely to develop breast and/or ovarian cancer. To help her decide whether and how to act on this knowledge, Gessen researches the history of genetic disease and genetic testing, and visits many scientists, past and present patients, and their families.
The book is precisely written and gives a thorough, rigorously thoughtful take on heredity and what genetic testing means for us now and in the future. Gessen ably balances her reporting with her personal experience, using each to inform the other. She raises questions I had never thought of, but will probably have to deal with in my lifetime. She doesn't always give answers, either; part of what makes the book so interesting is that it's never clear that there are one-size-fits-all answers to the questions we have about genetic testing – making the pondering of the questions that much more important.
The book is divided into three sections: The Past, The Present, and The Future. In the first, Gessen describes her family's challenges with their inherited diseases, and inquires how these hereditary diseases get passed down in the first place. Gessen is of Ashkenazi Jewish heritage, and this group has been particularly afflicted with hereditary disease; this seems particularly poignant since the topic of genetic testing immediately brings up distasteful connotations of eugenicism and Nazi thinking. “The Past” is a fascinating blend of scientific research and philosophical musings on family, relationships, and community.
In “The Present,” Gessen explores the current state of genetic testing, including how it developed, who has been affected, and how she came to her decision about how to act on her own genetic knowledge. In this section Gessen gets more deeply into the cruel variety of hereditary diseases and how these diseases shape the lives of those who have them. She also shows how the advent of genetic testing has completely altered these lives in ways that were previously unimaginable. This section is the longest and is densely packed with stories and information that help to round out whatever thoughts “genetic testing” already conjure up in our minds.
The final section, “The Future,” looks at where genetic testing is likely to take us in the future, and the fears this future evokes. Gessen very much argues that this future has already arrived, and therefore philosophical/ethical hand-wringing is of little use. Instead, she makes a compelling case that we need to look at what we already know and what testing could help us know, and start our thinking from there. The book ends rather abruptly and the reader is left to ponder her own philosophical/ethical questions without any recap or explicit guidance from the author.
The book is precisely written and gives a thorough, rigorously thoughtful take on heredity and what genetic testing means for us now and in the future. Gessen ably balances her reporting with her personal experience, using each to inform the other. She raises questions I had never thought of, but will probably have to deal with in my lifetime. She doesn't always give answers, either; part of what makes the book so interesting is that it's never clear that there are one-size-fits-all answers to the questions we have about genetic testing – making the pondering of the questions that much more important.
The book is divided into three sections: The Past, The Present, and The Future. In the first, Gessen describes her family's challenges with their inherited diseases, and inquires how these hereditary diseases get passed down in the first place. Gessen is of Ashkenazi Jewish heritage, and this group has been particularly afflicted with hereditary disease; this seems particularly poignant since the topic of genetic testing immediately brings up distasteful connotations of eugenicism and Nazi thinking. “The Past” is a fascinating blend of scientific research and philosophical musings on family, relationships, and community.
In “The Present,” Gessen explores the current state of genetic testing, including how it developed, who has been affected, and how she came to her decision about how to act on her own genetic knowledge. In this section Gessen gets more deeply into the cruel variety of hereditary diseases and how these diseases shape the lives of those who have them. She also shows how the advent of genetic testing has completely altered these lives in ways that were previously unimaginable. This section is the longest and is densely packed with stories and information that help to round out whatever thoughts “genetic testing” already conjure up in our minds.
The final section, “The Future,” looks at where genetic testing is likely to take us in the future, and the fears this future evokes. Gessen very much argues that this future has already arrived, and therefore philosophical/ethical hand-wringing is of little use. Instead, she makes a compelling case that we need to look at what we already know and what testing could help us know, and start our thinking from there. The book ends rather abruptly and the reader is left to ponder her own philosophical/ethical questions without any recap or explicit guidance from the author.
April 27, 2013
This is more than a simple testimony from a patient suffering from a cancer and, her odyssey to better grasp her condition through the lense of medical science. Biology and history are here intertwined with ethics so as to question, bluntly and without passion the impact of our understanding of genetics so far.
Without being sordid nor miserabilist she tells her doubt and fears (should she accept an oophorectomy? etc.) but, above all, expands her experience to write about eugenics (especially, strangely enough, within some Jewish communities) gene therapy or, again, designer babies.
It might be too broad and confusing at times but, straightforward, it's always relevant.
Without being sordid nor miserabilist she tells her doubt and fears (should she accept an oophorectomy? etc.) but, above all, expands her experience to write about eugenics (especially, strangely enough, within some Jewish communities) gene therapy or, again, designer babies.
It might be too broad and confusing at times but, straightforward, it's always relevant.
November 27, 2015
A journalist with a family history of breast and ovarian cancer must first decide whether to get testing, and then, discovering she is positive, decide what action to take. Along the way she covers a lot of ground about what we can learn from our genes, the value of screening, whether patients are sophisticated enough to handle this information and the distress and anxiety of uncertainty.
Written ten years ago, genetic testing was much less mainstream and discussed as a topic (this was prior to 'the Angelia effect'). However many of the lessons hold true today. This book was more comprehensive and held up better with time than I expected.
Written ten years ago, genetic testing was much less mainstream and discussed as a topic (this was prior to 'the Angelia effect'). However many of the lessons hold true today. This book was more comprehensive and held up better with time than I expected.
January 7, 2009
The author examines ever advancing world of genetics. She focuses on her own struggle to decide whether to have her breasts and ovaries removed after she tests positive for a gene that indicates she is likely to develop either breast or ovarian cancer. She also delves into many other areas related to genetic testing and medicine including why genes for some diseases tend to be found more frequently in some groups such as the Amish or Ashkenazi Jews. I found it to be a very interesting book that raises a lot of questions about the implications of genetic testing.
March 15, 2011
I found this book fascinating and well written. Gessen is a journalist who is diagnosed as having an abnormality with her BRCA gene which predisposes her to an 85% chance of breast cancer and a 40% chance of ovarian cancer. Awful odds. On the way to making her decision about whether to have her breasts and/or ovaries removed She does some very interesting research into genetic diseases, and the amazing frontiers of genetic work. In addition to BRCA, she discusses Huntington's chorea, "bubble" babies, genetic problems of the Orthodox Jews, Old World Mennonites, Amish, and more.
April 28, 2009
3 stars for some unfocused writing, but I liked the author's bitchy take on the BRCA genetic test decision-making process and wide range competence among doctors, as well as the subculture of cancer patients and people who test positive for the BRCA mutation.
Essentially there are only 2 books written by women who've tested positive for BRCA gene mutation: Blood Matters and Pretty is What Changes. Both are required reading, as they are completely different takes on the subject matter.
Essentially there are only 2 books written by women who've tested positive for BRCA gene mutation: Blood Matters and Pretty is What Changes. Both are required reading, as they are completely different takes on the subject matter.
March 7, 2011
I really enjoyed this book because the author tells an compelling story about her own journey with genetic testing but there is a lot of science and interviews to back up her opinions. This was great. It is easy to read because it feels like you're working with a friendc to work through some personal issues, but a lot of the scientific evidenceis right there and researched for you. You can get your science, educational and personal journey fix all in one book.
September 7, 2008
An interesting book. The author learns she has a genetic predisposition to breast cancer and ovarian cancer. She reports on the difficulty she has in making a decision whether on not to have her breasts and ovaries removed. She also includes chapters on families with a wide variety of genetic diseases and information on the current science of preventing and dealing with these diseases.
September 18, 2008
In the first and last chapters alone, this author tells a beautiful story about living in the midst of the genetic information age. She also offers a huge amount of research from a non-academic perspective. I was amazed to learn about genetic testing in Isreal, and came away with the hope that people can and will shape the future of science, not the converse.
July 18, 2010
This book is sort of dumb about genetics (poor understanding of evolution being the main problem) even while it is appropriately skeptical about connections between genes and behavior and put off by the personalities of scientists. Gessen is compelling though; I guess I wanted it to be more memoir and less research. She is quite mean but mostly keeps the bite under wraps.
December 12, 2009
At times this book could be tedious. But I did like that the author not only focused on her own breast cancer gene mutation, but also on other gene mutations, as well, and how they are being treated. This is not a book that you can cuddle up with in bed.
April 28, 2009
Very engaging probe into the implications of DNA testing for genetically inherited disorders, including Huntington's Disease, BRCA, PKD, and others. I wish Gessen had more to say about PGD and the reproductive politics surrounding these issues, though.
June 7, 2009
Author discovers she has inherited a defective gene common in her Jewish ancestors. While she decides whether to have a complete hysterectomy and masectomy to prevent cancer, she discusses the frontier of genetic medicine and the ethical questions that surround the diseases.
September 16, 2008
I was so excited that this book was as accessible as it was. The subject matter could lend itself to a very dense scientific text but Masha Gessen managed to make it both readable and enjoyable.
January 22, 2009
From The New York Times 100 Notable Books of 2008 List. Super interesting and well written if you can get past the first few pages.
March 28, 2009
A really interesting look at genetic disorders from a very personal viewpoint.
June 21, 2012
This book was so good, it hurt my head. I love a book that challenges me. This did it.
August 2, 2013
Choppy, but interesting.
April 30, 2014
Very thorough research but I expected more thoughts on her dilemmas and worries.
Read
July 24, 2016Well, I found the first chapter interesting.
skimmed-or-didn-t-finish
May 25, 2023Loved, loved Gessen's writing, especially about their own decisions. Skimmed the non-BRCA-related portions.
Displaying 1 - 28 of 28 reviews