A leading bioethicist offers critical insights into the scientific, ethical, and political implications of human genome editing.
Designer babies, once found only in science fiction, have become a reality. We are entering a new era of human evolution with the advent of a technology called CRISPR, which allows scientists to modify our genes. Although CRISPR shows great promise for therapeutic use, it raises thorny ethical, legal, political, and societal concerns because it can be used to make permanent changes to future generations. What if changes intended for the good turn out to have unforeseen negative effects? What if the divide between the haves and have-nots widens as a result? Who decides whether we genetically modify human beings and, if so, how?
Fran�oise Baylis insists that we must all have a role in determining our future as a species. The scientists who develop and use genome-editing tools should not be the only ones making decisions about future uses of the technology. Such decisions must be the fruit of a broad societal consensus. Baylis argues that it is in our collective interest to assess and steer the development and implementation of biomedical technologies. Members of the public with different interests and diverse perspectives must be among the decision makers; only in this way can we ensure that societal concerns are taken into account and that responsible decisions are made. We must be engaged and informed, think critically, and raise our voices as we create our future together.
Sharp, rousing, timely, and thought-provoking, Altered Inheritance is essential reading. The future of humanity is in our hands.
[20 Apr 2021] This book was short, but dry and in some places boring. The author is a bioethecist and she tries pretty hard, until the end, to be neutral on the issue of whether we should permit germline DNA editing or not. The first few chapters talk about what the possibilities are, then there are a couple chapters talking about the potential harms. The most interesting chapter was on "slow science" as opposed to "fast science". Then she talks about ways in which scientists, ethicists, and the general public can be involved. Those chapters really were pretty dull and mind-numbing. I frequently found my eyes glazing over and I would have to re-read a few pages.
I think the book is worth reading because she covers a lot of the ground that will have to be covered in the discussions about germline editing, including who needs to be involved. But it's probably a good idea to read some other viewpoints, too.
This book is a MUST Read if we the general public is to understand the risks of altering the human genome. Dr. Baylis explains in detail in her book Altered Inheritance how the human genome can be altered and the risks associated with doing it. She describes why humans should not rush to use the technology of Crispr. She argues that the general public needs to discuss what it means and have a say not just scientists and financiers. It is not a fast read given the science presented but I am glad I read it and know what is at "stake". Daily in 2020 we see examples of what is noted in Dr. Baylis' book that British Scientist Stephen Hawking said in 2010 and 2017. He predicted that human greed, stupidity and aggression would result in human extinction. Climate change, over population, over construction and simple 30-second funny videos! show stupidity, greed and aggression on our planet.
read this as followup on the walter isaacson book on crispr and jennifer doudna, hoping for deeper discussion of unique ethical issues raised by heritable germline genome editing that he only briefly touches on in that book. there are only two interesting chapters (4 and 5), but they mainly contain summary judgements rather than argument. the others are background science explanation and cautious committee-speak about the need to find consensus.
some thoughts in or occasioned by this book:
* the treatment versus enhancement distinction is not helpful, fails to illuminate even simple examples like making people less susceptible to alcoholism
* we can speak of "species-typical capabilities" like hearing and vision, and that phrasing sidesteps some of the important but separable controversies around how we build a world hostile to those with species-atypical endowments
* author mentions that editing out some species-atypical traits (eg deafness) will dwindle base of support for the already inadequate accommodations society makes for those traits. am thinking of this like ideal versus non-ideal theories of justice, where you must be mindful of a policy feedback loop.
* another example: we do not want to edit next generation to accommodate a racist society. the focus should be on making society not racist. it seems to me one way to fill in the argument here is to point out that "treatment" here depends on diagnosis: eg, on one leftwing view racialization is symptomatic of racism, like fever is of the flu.
* overly gene-centric view is generating a lot of the bad ideas about gene-editing. genes are not "causing" income inequality, political institutions are. good news: we don't need cutting edge science to do "policy-editing."
* parents are already wanting to bring all their negative-sum status competitions to the genetic arena: making next generation 6" taller, etc. this is both the most likely and dumbest problem in the medium term.
* if we cannot get universal access in place, cooperation/cohesion likely to break down, both within and between societies
* author doesn't discuss but what is "desirable" may itself be a function of genome, so we get a very unpredictable path dependence: first we edit this gene, then next generation consequently has new desire to edit another gene, and so on perhaps so gradually as to be imperceptible.
This book is a wonderful foray into the ethical and moral dilemmas of the current state of genetic modification and genetic engineering. Baylis does a great job of presenting not only the issues of the current day in genetics, but also proposing solutions to said issues. Very worth the read, and I'd recommend books like this to everyone as I see CRISPR-Cas9 technology in a different light than I originally viewed it.
Folks like George Church (Regenesis) and even Jennifer Doudna (A Crack in Creation) who won a Nobel Prize for her work in discovering CRISPR-Cas9 I think tend to overstate the potential of genetic engineering while downplaying the fact that there is much to learn and much we don't understand. Heck, the world's first CRISPR-Cas9 altered babies were born in 2018, and we didn't even have the human genome fully sequenced until 2022! If you want a good picture of both sides of the coin, the good and the ugly, I'd recommend reading this book, Biotech Juggernaut from Stuart Newman, Regenesis by George Church, and A Crack in Creation by Doudna.
These issues are going to touch us all, and a lot of them have already affected us. As things stand today the path forward particularly regarding CRISPR-Cas9 tech is being decided behind closed doors by a group of venture capitalists and scientists, as Baylis references in this book, and as Newman indicates several times in his book. I agree with Baylis that the general population needs to be much more aware of what's happening and how it will likely affect those in the middle and lower classes. Much more transparency and public discussion needs to be had regarding these issues.
Dr. Baylis makes a bold attempt to unravel the tangle of ethical issues surrounding the technology of genetic engineering. Her conceptualizations such as treatment vs. enhancement, slow science vs. fast science, and basic versus applied are useful. She delves deeply into the various commissions, committees, conferences, and summits devoted to this topic, and reveals the wide range of different perspectives and opinions within the scientific community. She issues a clarion call for equity, broad societal participation, and protection of the public good. I was hoping the author would try speculating on far-future CRISPR impacts such as the manipulation of human psychological traits, the impact on the very essence of being human, and potential nefarious uses such as biological terrorism/warfare. Yet her experience and dedication to this field is evident in every chapter. Dr Baylis deserves full credit for shining the light on the moral, political, and social issues which so often get swept aside in the march of scientific progess.
A very thought-provoking read on the scientific, ethical, and political implications of human genome editing. The book is a call to action to scientists and society at large to come together in debating, reflecting, and taking responsibility for the future of humanity and the role human genome editing will play in it.
A short read, that does a good job of covering issues surrounding CRISPR technological developments. Was a bit dry, and wish there was a bit longer. However, it was a good introduction to these topics