Françoise Baylis


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

Cover Interview of February 05, 2020

A close-up

If someone were fanning through the pages of this book at a local bookstore or library, I would encourage them to peruse the first chapter “Targeting a Single Gene: Huntington’s Disease” which is focused on somatic cell genome editing (non-heritable genome editing) and then to look at chapter three, “Babies by Design,” which is focused on heritable germline genome editing.

The first chapter tells the story of Boston police officer Joe O’Brien, his diagnosis of Huntington’s Disease, and the subsequent knowledge that two of his four adult children have inherited the disease. Typically, people die of this progressive brain disorder within fifteen to twenty years after the onset of symptoms. In the coming years, all three will experience involuntary jerking and twitching movements, emotional difficulties, disorganized thinking, problems with walking, coordination, and balance, as well as cognitive and emotional impairment, followed by an early death.

This fictional story, which is told in a novel written by Lisa Genova, is followed by the true story of Jane Mervar. Her husband (Karl Mukka) and daughter (Karli Mukka) have died of Huntington’s Disease. She is left to care for her daughters, Jacey and Erica, both of whom have juvenile Huntington’s Disease.  The point of these two stories is to make clear that there are important potential benefits with somatic cell genome editing, if we ever learn to use this technology to treat patients afflicted with serious debilitating, life-threatening diseases.

Chapter three, “Babies by Design” is not about treating patients, it is about genetically manipulating embryos and gametes to have the children we desire.  This chapter reviews the history of assisted human reproduction and the early days of genetic selection.  It explains how we are moving from “selection” to “design.”

The first genome-edited babies were twins born in October 2018.  Their birth became public knowledge in late November 2018. Jiankui He, the architect of the experiment, thought it would be desirable for children to have immunity to HIV infection.  He enrolled couples where the male partner was HIV positive and he genetically modified their embryos in vitro to confer resistance to HIV.  The experiment involved making modifications to the CCR5 gene.  In 2019, a third child was born of this experiment.

Also in 2019, a Russian scientist by the name of Denis Rebrikov announced that he intended to follow in Jiankui He’s footsteps.  He planned to do the research with couples where the woman was HIV positive.  When he could not find HIV positive women who wanted to get pregnant and to participate in his proposed research, he changed targets.  He announced an interest in modifying the GJB2 gene responsible for a type of hereditary deafness.

Efforts to design future generations raise challenging ethical questions. Who decides which traits are desirable and should be introduced, and which traits are undesirable and should be eliminated? At the embryo stage, what is the difference between eliminating traits and eliminating people with those traits (which begins to look like eugenics)? Why expose possible future children to unknown harm from heritable human genome editing by manipulating them at the embryonic stage when these beings do not have to be made, manipulated, and then brought into existence?

If these sorts of questions are of interest, the reader will enjoy chapter three and will be able to think critically about the ethical issues raised in relation to the use of this same technology in somatic cells to treat patients who are suffering.