On her book Altered Inheritance: CRISPR and the Ethics of Human Genome Editing
Cover Interview of February 05, 2020
In a nutshell
On December 30, 2019, the Chinese scientist
Jiankui He was sentenced to three years in jail and fined three million yuan.
His crime? Creating the world’s first CRISPR-edited babies. My book Altered
Inheritance offers an ethical perspective on the science and politics
leading up to the births of these children.
CRISPR (pronounced “crisper”) is the
acronym for clustered regularly interspaced short palindromic repeats.
This new technology allows scientists to remove, add or alter DNA in living
organisms. Scientists are excited about this technology because it is faster,
more accurate, more efficient and cheaper than previous genome editing
technologies.
With this technology scientists can make
genetic changes to our somatic cells (changes that die with us), or changes to
our germ cells (changes that we pass on to our children). Somatic cells are
all of our non-reproductive cells and changes to these cells are not heritable
– meaning they will not be passed down through the generations. Germ cells are
our reproductive cells – gametes (egg and sperm) and the cells that make
gametes. Changes to these cells are heritable. As well, heritable genome
editing can involve the use of early stage embryos.
Both types of human genome editing can be
used for health-related reasons (treatment or prevention) or non-health related
reasons. The genetic changes could be for treating patients, preventing disease
transmission, or pursuing various enhancements.
In exploring questions about the ethics and
governance of human genome editing, I discuss the potential benefits, harms and
wrongs of this technology. In this discussion I pay attention to the unique
potential harms to women research participants. I then invite the reader to
consider: the merits of ‘slow science’, which is about taking time to reflect
on the BIG questions; the role of experts in policy making; the value of a global
moratorium on heritable human genome editing; and the importance of broad
societal consensus in deciding where to from here.
In my view, the human genome belongs to all
of us and we should all have a say in whether, and if so how, to pursue
genome editing technology. All of us – scientists, science funders, civil
society (including non-governmental and not-for-profit organizations, community
groups, indigenous groups, charitable organizations, and faith-based
organizations), interested citizens who are not formally aligned with any
interest group, artists, and biohackers – need to think carefully about “what
kind of world we want to live in” and whether human genome editing technology can
help us to build that world.
Altered Inheritance is a call to action. A call for scientists to slow down and
exercise their moral imagination. A call for all of us to take collective
responsibility for our biological and social future.
[T]he Holocaust transformed our whole way of thinking about war and heroism. War is no longer a proving ground for heroism in the same way it used to be. Instead, war now is something that we must avoid at all costs—because genocides often take place under the cover of war. We are no longer all potential soldiers (though we are that too), but we are all potential victims of the traumas war creates. This, at least, is one important development in the way Western populations envision war, even if it does not always predominate in the thinking of our political leaders.Carolyn J. Dean, Interview of February 01, 2011
The dominant premise in evolution and economics is that a person is being loyal to natural law if he or she attends to self’s interest and welfare before being concerned with the needs and demands of family or community. The public does not realize that this statement is not an established scientific principle but an ethical preference. Nonetheless, this belief has created a moral confusion among North Americans and Europeans because the evolution of our species was accompanied by the disposition to worry about kin and the collectives to which one belongs.Jerome Kagan, Interview of September 17, 2009
In a nutshell
On December 30, 2019, the Chinese scientist Jiankui He was sentenced to three years in jail and fined three million yuan. His crime? Creating the world’s first CRISPR-edited babies. My book Altered Inheritance offers an ethical perspective on the science and politics leading up to the births of these children.
CRISPR (pronounced “crisper”) is the acronym for clustered regularly interspaced short palindromic repeats. This new technology allows scientists to remove, add or alter DNA in living organisms. Scientists are excited about this technology because it is faster, more accurate, more efficient and cheaper than previous genome editing technologies.
With this technology scientists can make genetic changes to our somatic cells (changes that die with us), or changes to our germ cells (changes that we pass on to our children). Somatic cells are all of our non-reproductive cells and changes to these cells are not heritable – meaning they will not be passed down through the generations. Germ cells are our reproductive cells – gametes (egg and sperm) and the cells that make gametes. Changes to these cells are heritable. As well, heritable genome editing can involve the use of early stage embryos.
Both types of human genome editing can be used for health-related reasons (treatment or prevention) or non-health related reasons. The genetic changes could be for treating patients, preventing disease transmission, or pursuing various enhancements.
In exploring questions about the ethics and governance of human genome editing, I discuss the potential benefits, harms and wrongs of this technology. In this discussion I pay attention to the unique potential harms to women research participants. I then invite the reader to consider: the merits of ‘slow science’, which is about taking time to reflect on the BIG questions; the role of experts in policy making; the value of a global moratorium on heritable human genome editing; and the importance of broad societal consensus in deciding where to from here.
In my view, the human genome belongs to all of us and we should all have a say in whether, and if so how, to pursue genome editing technology. All of us – scientists, science funders, civil society (including non-governmental and not-for-profit organizations, community groups, indigenous groups, charitable organizations, and faith-based organizations), interested citizens who are not formally aligned with any interest group, artists, and biohackers – need to think carefully about “what kind of world we want to live in” and whether human genome editing technology can help us to build that world.
Altered Inheritance is a call to action. A call for scientists to slow down and exercise their moral imagination. A call for all of us to take collective responsibility for our biological and social future.