Back on November 26th 2018, a Chinese scientist, He Jiankui, captured international attention when he claimed to have used the gene-editing tool CRISPR/Cas-9 to alter two embryos. It was the day before the Second International Summit on Human Genome Editing opened, and He was one of the scheduled speakers.
A preliminary investigation by Chinese authorities in the province of Guangdong, where He worked for the Southern University of Science and Technology (SUSTech), confirmed the births and stated that He “defied government bans and conducted the research in the pursuit of personal fame and gain.” That same day, SUSTech announced it rescinded the work contract with Dr. Jiankui He and terminated any of his teaching and research activities at SUSTech.
Chinese authorities are holding He Jiankui under house arrest, and likely to face criminal charges. (Some have gone so far to suggest he could face death penalty.) They find him responsible for creating the world’s first gene-edited babies, having forged ethical review papers and recruited eight couples to participate in an experiment, resulting in two pregnancies. One of the mothers gave birth to twins nicknamed “Lulu” and “Nana.” Another woman is still carrying a gene-edited fetus.
He explained that DNA was altered to prevent the embryos from contracting HIV later in life, but most experts think the editing was flawed: using a potentially dangerous and unproven technique to target a disease that’s now highly treatable could put the babies at risk for future health problems. Among them, CRISPR/Cas-9 pioneers Feng Zhanga and Jennifer Doudna.
this work reinforces the urgent need to confine the use of gene editing in human embryos to settings where a clear unmet medical need exists, and where no other medical approach is a viable option, as recommended by the National Academy of Sciences.
However, George Church, another CRISPR/Cas-9 heavy weight, took a more nuanced view. ‘I feel an obligation to be balanced,’ he said to Science, and remarked:
The most serious thing I’ve heard is that he didn’t do the paperwork right. He wouldn’t be the first person who got the paperwork wrong. It’s just that the stakes are higher.
Deliberately intervening in the human genome for the purposes of selecting traits of future children has long been a central theme in science fiction. The discovery of DNA and the emergence of the CRISPR/Cas-9 system in 2012, which enabled precisely targeted alterations to DNA sequences in living cells, make it a real and distinct possibility now.
Should scientists toy with the secret to life? When are such interventions, if at all, ethically acceptable? How do we decide what is right or wrong? How do we engineer a proper moral framework?
An emblematic moment in the history of scientific self-regulation was the Asilomar conference on recombinant DNA technology in 1975. In 2015 two Asilomar veterans, David Baltimore and Paul Berg, together with pioneers of CRISPR/Cas9 Jennifer Doudna and George Church among others, published a paper(1) seeking a “prudent path forward for genomic engineering and germline gene modification.”
Two years ago, the National Academies of Sciences, Engineering and Medicine published and extensive report(2) on genome editing, which contains a series of overarching principles and recommendations for basic research, somatic therapy and heritable genome editing, enhancement and public engagement. They are now planning an international commission to address these questions.
The position of Nuffield Council on Bioethics, a UK independent body that examines and reports on ethical issues in biology and medicine, is that to genetically engineer human embryos and influence the characteristics of future generations could be ethically acceptable, provided if, and only if, two principles are satisfied:
Principle 1 – The welfare of the future person: Gametes or embryos that have been subject to genome editing procedures (or that are derived from cells that have been subject to such procedures) should be used only where the procedure is carried out in a manner and for a purpose that is intended to secure the welfare of and is consistent with the welfare of a person who may be born as a consequence of treatment using those cells.
Principle 2 – Social justice and solidarity: The use of gametes or embryos that have been subject to genome editing procedures (or that are derived from cells that have been subject to such procedures) should be permitted only in circumstances in which it cannot reasonably be expected to produce or exacerbate social division or the unmitigated marginalisation or disadvantage of groups within society.
In a thorough and brave report(3) published on July 2018, they present and discuss the state of the art, the ethical debate and the governance, and they conclude with 15 recommendations (some of them specifically for UK). The report takes a progressive position on this thorny matter. (These are the words of Karen Yeung, chair of the working party that produced the report, in the prologue):
When I was asked to take on the role of Chair in the summer of 2016, my initial instinct was to decline the invitation (…) I recognised that by taking up the role, I would be taking up something of a poisoned chalice (…) Nevertheless, I overcame my initial reluctance to accept the role of Chair, recognising – as I have often counselled my students – that the difficulty, complexity and contestability surrounding a set of questions are not good reasons to shy away from attempting to grapple with them. This is all the more so when the questions are real, important and can have tangible and profound consequences for the lives of individuals and for society more generally.
In my humble opinion, humane genome editing and its reproduction applications will define in the coming years the frontier of, not only what we are able to technologically achieve, but perhaps more fundamentally, what we are able to globally plan and agree. In a world where democracy and international cooperation are not at their best, how will we rationally deal with the challenging opportunity to engineer what “we” want to be?
To illustrate the challenge, let me suggest(4) this sort of (I hope the author will forgive me for the ‘intended’ pun) faustian bargain: Imagine that we discovered a genetic intervention to predispose individuals to a higher level of morality than, let’s say, He Jiankui’s. Should it be permissible to select for it? Should it be obligatory? In other words, is it moral to select for morality?
(1) Baltimore, David, et al. ‘A Prudent Path Forward for Genomic Engineering and Germline Gene Modification’. Science, vol. 348, no. 6230, Apr. 2015, pp. 36–38. science.sciencemag.org, doi:10.1126/science.aab1028.
(3) ‘Genome Editing and Human Reproduction’. Nuffield Bioethics, http://nuffieldbioethics.org/project/genome-editing-human-reproduction. Accessed 27 Jan. 2019.
(4) Faust, Halley S. ‘Should We Select for Genetic Moral Enhancement? A Thought Experiment Using the MoralKinder (MK+) Haplotype’. Theoretical Medicine and Bioethics, vol. 29, no. 6, 2008, pp. 397–416.