Françoise Baylis

 

On her book Altered Inheritance: CRISPR and the Ethics of Human Genome Editing

Cover Interview of February 05, 2020

The wide angle

Champions of heritable human genome editing often speak of the right to have children. From their perspective, access to heritable human genome editing is a reproductive right, and couples who are at risk of having children with a heritable disease should be able to use this technology so that they might have healthy children.

In opposition to these views, it is frequently noted that there are safer and simpler ways of having healthy children including, for example: in vitro fertilization (IVF) using disease-free donor eggs, sperm, or embryos; or IVF using one’s own gametes followed by pre-implantation genetic diagnosis to screen out embryos with genetic disease. Objections to the first of these two options generally focus on the desire for genetically-related children. Objections to the second option generally focus on the handful of couples globally who cannot make healthy embryos using their own gametes and for whom pre-implantation diagnosis to identify healthy embryos is therefore not an option.

Other champions of heritable human genome editing wax eloquent about scientific freedom and serendipity. They believe that scientists should be free to ask and answer all questions. Only in this way can science be independent of major political and financial powers.

This book defends the idea that decisions about whether to proceed with heritable human genome editing are too important to leave to scientists. A central claim in the book is that “the human genome belongs to all of us” and that we should all have a say in what happens. It is not for the elites to determine the future of our species.

Metaphorically speaking, the human genome is the one thing we all have in common and, as such, all have a common interest in. This idea undergirds claims made by me and others to the effect that the human genome is the common heritage of humanity. From this perspective, the pivotal concern is not “who has a right to do what?” but rather “how might the use of this technology promote the common good?”

I write, “[w]e all have a stake in how human genome editing might be developed and used. For this reason, we should all have an opportunity to reflect on and contribute to decision-making about a possible new world in which human genome editing is used to eliminate, introduce, or modify genes.” Altered Inheritance promotes both science literacy and ethics literacy and thereby aims to empower all readers so that they can effectively contribute to discussion and debate about the ethics and governance of heritable human genome editing.

My commitment to equity and social justice is the fruit of a 30-year career in bioethics. My PhD is in philosophy and I have worked full-time in a think tank, a hospital, a philosophy department, and a medical school. These rich and diverse experiences have allowed me to witness and reflect upon injustices and to develop a fondness for a future characterized by neighborliness, reciprocity, social solidarity, and community.

This is my last book; I will not write another. I say this with confidence because I have poured into this book pretty much all that I know and care about. I have drawn on my writings on the ethics of human embryo research, human embryonic stem cell research, reproductive ethics, research involving women, in vitro fertilization (IVF), animal human chimeras and hybrids, human cloning, mitochondrial donation, ethics consultation, public health, the common good, decision making by consensus, and integrity-preserving compromise. I have also drawn on my experiences with various policy initiatives on assisted human reproduction, stem cell research, research involving humans and human genome editing.