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Thursday, March 14, 2019

An ethical pathway for gene editing

Julian Savulescu & Peter Singer
First published January 29, 2019

Ethics is the study of what we ought to do; science is the study of how the world works. Ethics is essential to scientific research in defining the concepts we use (such as the concept of ‘medical need’), deciding which questions are worth addressing, and what we may do to sentient beings in research.

The central importance of ethics to science is exquisitely illustrated by the recent gene editing of two healthy embryos by the Chinese biophysicist He Jiankui, resulting in the birth of baby girls born this month, Lulu and Nana. A second pregnancy is underway with a different couple. To make the babies resistant to human immunodeficiency virus (HIV), He edited out a gene (CCR5) that produces a protein which allows HIV to enter cells. One girl has both copies of the gene modified (and may be resistant to HIV), while the other has only one (making her still susceptible to HIV).

He Jiankui invited couples to take part in this experiment where the father was HIV positive and the mother HIV negative. He offered free in vitro fertilization (IVF) with sperm washing to avoid transmission of HIV. He also offered medical insurance, expenses and treatment capped at 280,000 RMB/CNY, equivalent to around $40,000. The package includes health insurance for the baby for an unspecified period. Medical expenses and compensation arising from any harm caused by the research were capped at 50,000 RMB/CNY ($7000 USD). He says this was from his own pocket. Although the parents were offered the choice of having either gene‐edited or ‐unedited embryos transferred, it is not clear whether they understood that editing was not necessary to protect their child from HIV, nor what pressure they felt under. There has been valid criticism of the process of obtaining informed consent.4 The information was complex and probably unintelligible to lay people.

The info is here.