The New Bioethics

A Multidisciplinary Journal of Biotechnology and the Body

ISSN: 2050-2877 (Print) 2050-2885 (Online) Journal homepage: https://www.tandfonline.com/loi/ynbi20

Altered Inheritance: CRISPR and the Ethics of

Human Genome Editing
By Francoise Baylis. Pp. 268. Cambridge, Massachusetts: Harvard University
Press. 2019. £19.95. ISBN: 978-0-674-97671-9.

Donna Dickenson

To cite this article: Donna Dickenson (2020) Altered Inheritance: CRISPR and the Ethics of
Human Genome Editing, The New Bioethics, 26:1, 75-77, DOI: 10.1080/20502877.2020.1729578

To link to this article: https://doi.org/10.1080/20502877.2020.1729578

Published online: 19 Feb 2020.

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the new bioethics, Vol. 26 No. 1, 2020, 75–80

BOOK REVIEWS

Altered Inheritance: CRISPR and the Ethics of Human Genome Editing. By Fran-
coise Baylis. Pp. 268. Cambridge, Massachusetts: Harvard University Press. 2019.
£19.95. ISBN: 978-0-674-97671-9.

‘I don’t want to live in a world where a select, privileged few are able to inscribe their
privilege in their DNA and thereby exacerbate unfair class division and other social
injustices. I want for all of us to reflect on whether heritable genome editing is a boon
or a threat’ (p. 8). Ending her book’s prologue with these words, the eminent Cana-
dian bioethicist Francoise Baylis calls for an informed and socially inclusive debate
on whether it is right or wrong to permanently alter the human genome through new
biotechnologies.
As Baylis makes plain, the success of CRISPR gene editing is much more limited
and double-edged than media coverage suggests. This technology, fully described as
CRISPR-Cas9 and standing for ‘clustered regularly interspaced short palindromic
repeats,’ occasioned considerable positive press until 2018. That year, however,
saw the birth of twin Chinese babies whose genomes had been (only partly success-
fully) edited for resistance to HIV (human immunodeficiency virus). Now there is an
urgent need to publicize and debate the ethical issues, before the technique becomes
widespread by default. Baylis describes herself as agnostic about heritable gene
editing (otherwise known as germline gene editing) in the technology’s present
state, after providing a scientifically balanced and complete discussion of the
ethics of the technology itself. Principally, however, she is concerned about many
of its implications for social justice, as well as about genetic determinism and a
rise in intolerance for diversity. Although proponents of heritable genome editing
counter that it involves gene editing, not people editing, this is a specious argument:
the genes are being edited in (future) people, not fruitflies.
The first three chapters of the book lay out the scientific background for the
CRISPR technique, enabling the reader to grasp the details easily. Baylis’s discus-
sion of the science is careful and complete: no mean feat when the technology is
mutable and complex. For example, she accurately distinguishes heritable genome
editing, involving germline cells such as eggs and sperm and carried forward
through successive generations, from somatic genome editing, performed on non-
germline cells in a single individual and not heritable. This is important because
many media commentators have used the recent comparative success and accept-
ability of somatic editing to assume that germline editing poses no problems.
Although some readers might feel that ‘getting the science right’ slows the book
down, it is made gripping from the outset by being illustrated through the per-
sonal story of a family at genetic risk of the fatal neurological condition Hunting-
ton’s Disease.

DOI 10.1080/20502877.2020.1729578
76 BOOK REVIEWS

By the end of chapter two, Baylis has also woven her social justice themes into the
science, noting that ‘taxpayers are the venture capitalists for somatic cell human
genome editing research, without any obvious prospect of direct return on invest-
ment’ (p. 25). This is correct, given researchers’ frequent dependence on government
funding, without any guarantee to taxpayers that the research will be translated into
equitably distributed clinical care. However, that conundrum is too rarely noticed.
So is the burden on women of heritable genome editing, which Baylis elaborates
in precise and comprehensive terms (pp. 88–90). There are no benefits to women
providing eggs or embryos for germline genetic research, whereas there are
genuine risks from hormone stimulation and egg retrieval. In a clinical trial of heri-
table genome editing, there would also be the risks entailed in pregnancy including
miscarriage. Baylis summarizes:
Finally, if we can imagine a future in which safe and effective heritable genome editing is
both available and accessible, we can also easily envision harms to women (and couples)
from either resisting or acquiescing to social pressure to use this technology to create
their children. (p. 89)

Significantly, in the lengthy and supposedly comprehensive Nuffield Council

report of July 2018, there was not a single mention of the potential harms to women.
Baylis develops a distinction between ‘slow science’ and ‘fast science’ in chapter
seven, which is in many ways the crux of the book. In a useful timeline of the
brief history of heritable gene editing, she shows how ‘fast science’ may jump all
too readily from the assumption that because a technological ‘advance’ is possible,
it should be permissible. Ethical questioning is seen as Luddite interference, with
increasing intolerance for dissent itself becoming a genuine ethical problem. As
Baylis carefully demonstrates, the question about hereditable gene editing has
already shifted from ‘Should it happen?’ to ‘How should it happen?’ This tendency
to allow bioscience to do whatever it can do is common to all the new biotechnolo-
gies, but it is even more dangerous when the technology affects not only our present
society but also future generations, as does CRISPR hereditable genome editing.
Indeed, if I have one critique of Baylis’s formidable and important book, it con-
cerns her hasty dismissal of questions about the consent of future generations as a
‘red herring’ (p. 108). Baylis remarks that embryos do not consent to any interven-
tions unfavourably or favourably affecting their inherited traits, such as whether
their mother smokes or takes folic acid, because they are not capable of giving
consent. Although this is obviously true, we are talking not about embryos but
rather the people they might become, who would be persons with capacity to
consent. Far from being a red herring, the problem of future generations – for
such this is – is a venerable, contentious and difficult question in moral philosophy.
It is also vital to the notion of broad societal consensus, which is the crux of Baylis’s
concern. The obvious rejoinder is that the best we can hope for is consensus among
those alive today.
The targets of hereditable gene editing, future persons, could rightfully reject any
claim that they have consented, particularly given our very incomplete state of
knowledge about the mechanisms and consequences of the technology. We can
know the risks and benefits only imperfectly, and given the complexity of genetics,
 BOOK REVIEWS 77

we have a very high chance of getting it badly wrong. Although we might try to
lessen that chance by insisting on clinical trials of germline gene editing, monitoring
those trials will be far from straightforward, not least because those affected may not
consent to be monitored (Cwik 2019). Nor is it clear how many generations would
have to be monitored, or what the responsibilities of researchers would be if faults
are discovered. These are serious questions which deserve serious consideration.
However, Baylis does discuss in detail the various roles open to ethicists in press-
ing for genuine public empowerment, which considerably mitigates her earlier dis-
missal of consent of future generations as a red herring. She evinces a breadth and
grasp of the concrete political context that matches the gravity of her subject,
having previously summarized that environment as ‘a capitalist, heedlessly liberal,
curiosity-driven, competition-infused world’ (p. 119). Baylis might well have des-
paired of our political will and ability to deal with human genome editing. To her
credit, she never gives in to that temptation, providing readers instead with the
tools needed to evaluate and resist hasty acceptance of altering our inheritance.
Here is her envoi: ‘This book is a call to action – a call for us to take collective
responsibility for our biological and social future’. ‘[A]s a direct consequence of
increasingly audacious moves by some scientists to engineer future generations,
important decisions must now be made – decisions that will set a new course for
science, society, and humanity. May these decisions be inclusive and consensual.
May they be characterized by wisdom and benevolence. And may we never lose
sight of our responsibilities to ‘us all’ (pp. 220–221).

DONNA DICKENSON
Emeritus Professor of Medical Ethics and Humanities, University of London
Honorary Senior Research Fellow, University of Bristol
d.dickenson@bristol.ac.uk
© 2020 Donna Dickenson

Reference
Cwik, B., 2019. Intergenerational monitoring in clinical trials of germline gene editing. Journal of Medical
Ethics. doi:10.1136/medethics-2019-105620.

Articulating Intersex: A Crisis at the Intersection of Scientific Facts and Social Ideals.
By Natalie Delimata. Switzerland: Springer Nature. 2019. £ 69.99. ISBN 978-3-
030-21897-3.

This fascinating book has the look of a transposed Ph.D. thesis and thus the implied
strengths and weaknesses attendant upon such a format. It is dense, comprehensive
and well fitted for a reference library copy. Given the price perhaps only those with a
specialist interest in the topic would buy it for their personal library. It is useful to
both ethicists and specialist practitioners, as it is very well laid out with the introduc-
tory and final chapters making clear to the reader the focus of exploration and the
conclusions being drawn.