24 July 2017
ByAppeared in BioNews 910
The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids - And the Kids We Have
Published by Farrar, Straus and Giroux
ISBN-10: 0374160783, ISBN-13: 978-0374160784
Buy this book from Amazon UK
The Gene Machine is award-winning author Bonnie Rochman's book on pre-and post-natal genetic testing. In it, she navigates through classical bioethical issues such as carrier status testing, PGD, and termination. More contemporary issues, stemming from the capacity to select embryos with desired genes, or indeed to edit the genetic makeup of a prospective child are also covered. Unique to this book is the prism through which it is written: prospective parents, parents, scientists, clinicians and advocacy groups all share their stories and encounters with gene technologies.
The Gene Machine focuses on the evolution of genetic technologies, and the associated issues that these increasingly powerful tests are causing within the medical landscape. Rochman begins with an illustration of how the Ashkenazi Jewish community in the USA 'beat' Tay-Sachs disease: a fatal gene-driven disorder in children by determining the 'carrier status' of prospective parents. This gives our first encounter in the book as to how testing for a disease-associated gene can benefit whole communities where it is disproportionately represented. The book also alludes here to termination of fetuses with Tay-Sachs syndrome, a topic expanded later in the book.
Next Rochman steers us towards is the advent of PGD. She highlights how screening embryos for a lethal gene mutation in-vitro – such as the mutation causing Tay-Sachs – negates the need for termination. However, she is quick to highlight that testing for gene mutations is not always indicative of an actual disease, but rather of risk. She details the account of a mother who selected an embryo through PGD that did not bear a BRCA gene mutation (which increases the risk of developing breast cancer). It is at this juncture that Rochman begins to highlight ethical issues associated with selecting an embryo and therefore a child that bears a genotype selected by a parent.
Yet the Gene Machine is sparse on dealing with the complex ethical issues that genetic technologies create. The topic of 'designer babies' is addressed in terms of selecting embryos that do not bear specific genetic traits such as BRCA mutations or chromosomal abnormalities such as Down's syndrome, But Rochman does not develop these issues on a wider scale. Though she does touch on bioethical topics such as 'the slippery slope', she does not probe deeply enough. I believe Rochman needed to first address how societies understand the concept of health, and then how we classify human impairment as either a disease or disability.
Rochman establishes the ability of scientists to investigate the genetic make-up of an embryo, and investigates how this is affecting the prevalence of gene-driven impairments such as deafness or Down's syndrome. For example, she explores how some deaf parents may want to select an embryo with the genetic profile for deafness, citing cultural reasons. In great detail, she then describes how the number of Down's syndrome births is decreasing because of PGD. In my opinion, at this juncture Rochman should have questioned why certain genetic impairments, be they diseases or disabilities, are disvalued by society to the extent that they are selected out.
One of the new powerful technologies only briefly touched upon is the CRISPR/Cas9 system. CRISPR-Cas9, as Rochman describes, has the potential to edit the genome of an embryo prior to implantation. Potentially, parents could include or exclude certain genes in the embryos that will become their children. Rochman notes this has unsettling eugenic connotations. While this technology is still in its infancy, it nonetheless opens a debate on how much input we should be allowed have in the genomes of future generations.
Overall, I believe this book serves as an excellent introduction to the field of genetic technologies. Personally, coming from a scientific background, I had thought that the book would be top-heavy in explaining introductory biological concepts, however I was surprised at how efficiently Rochman details gene biology.
Moreover, I thoroughly enjoyed all the case presentations used to illustrate her points regarding a particular gene. Personally, through my reading on gene technologies, I find examples such as Huntington's disease, mutations in cancer-predisposing genes, and Down's syndrome are all too often used to highlight an author's point. But unique to this book is Rochman's ability to describe many different impairments and complement them with personal testimonies. These real-life accounts make the book accessible for the less scientifically-minded reader, and provide a perspective for those with a background in science that is often lost: the human story.
I believe that the book is lacking in detail in certain aspects, however, which may deter a reader with a strong background in science and bioethics. As mentioned, two key issues that are not elaborated on fully are the issues of what it is to be healthy, and the understanding of the difficult juncture between what classifies an impairment as a disease or disability. I hope Rochman follows up this book with a Part 2, as the issue that the book's final chapter deals with genome editing and the potential ability to genetically tailor an embryo. This going to become more prominent in the coming years, and cause much more debate on how these technologies impact families and society.
To summarise, The Gene Machine is a book written with all readers in mind, providing an excellent introduction to the progress of genetic technologies through the years, and how with each advancement comes more ethical considerations.
Buy The Gene Machine: How Genetic Technologies Are Changing the Way We Have Kids - And the Kids We Have from Amazon UK.