The Fundamental Ethical Flaw in Jiankui He’s Alleged Gene Editing Experiment

By Julian Savulescu

Chinese researcher Jiankui He of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her still susceptible to HIV).

On July 29, 2017, He uploaded a copy of his lecture on YouTube, “Evaluating the safety of germline genome editing in mouse, monkey and human embryos“. He finishes the lecture (see 11:22) arguing that experimentation in humans should be “slow” and with “caution”, remarking that “a single case of failure might kill the entire field”, as in the case of the death of Jesse Gelsinger. He closes with a picture of Gelsinger.

Gelsinger died during a somatic (not germline) gene therapy trial nearly 20 years ago. Early gene therapy trials were conducted with an emphasis on participant consent. A somatic cell gene therapy was developed for ornithine transcarbamylase deficiency, a disorder of nitrogen metabolism. The condition comes in two forms: mild, with normal life expectancy and management by diet, and severe, which is lethal in the first year. Researchers, acting on the advice of ethicists, decided to conduct the first trials in adults with the mild form of the disease as they were capable of consenting. Gelsinger consented at age 18 and died due to a catastrophic immune reaction. He would have had a normal life expectancy in the absence of the intervention.

At the time, I wrote this paper. I argued the main failing of that experiment was failure to minimise expected harm. The design of the trial was flawed; it should have been conducted in infants with the severe form of the disease, as this would have resulted in less expected harm.

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Harnessing the Power of Moral Identity to Improve Morality

Written by Doug McConnell

Over the last 25 years there has been an explosion of psychological research investigating the influence of ‘moral identity’ on agency with a recent meta-analysis of 111 studies concluding that people’s moral identity has as much of an effect on agency is either their moral emotion or powers of moral reasoning (Hertz & Krettenauer, 2016). Although the mainstream view of moral psychology is that moral self-concept plays a significant role in moral agency, the practical ethical implications of this view remain underexplored. Here, I argue that one of those implications is that, in situations where we need to improve morality, such as decision-making in the boardroom, consumer behaviour, and reform of criminal offenders, we should do so (in part) by developing people’s moral identities. Indeed, in many cases, changes to moral identity have the potential to efficiently deliver relatively large moral improvements. Continue reading

Press Statement: Monstrous Gene Editing Experiment

Chinese researcher He Jiankui of Shenzhen claims to have gene edited two healthy embryos, resulting in the birth of baby girls born this month, Lulu and Nana. He edited a gene to make the babies resistant to HIV. One girl has both copies of the gene modified while the other has only one (making her still susceptible to HIV). 

If true, this experiment is monstrous. The embryos were healthy. No known diseases. Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer. There are many effective ways to prevent HIV in healthy individuals: for example, protected sex. And there are effective treatments if one does contract it.

This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit.

It contravenes decades on ethical consensus and guidelines on the protection of human participants in research.

In many other places in the world, this would be illegal punishable by imprisonment.

Could gene editing ever be ethical? If the science progressed in the future and off target mutations reduced to acceptable and accurately measurable level, it might be reasonable to consider first-in-human trials (with appropriate safeguards and thorough ethics review) in one category of embryos: those with otherwise lethal catastrophic genetic mutations who are certain to die. Gene editing for this group might be life-saving; for these current babies, it is only life-risking.

These healthy babies are being used as genetic guinea pigs. This is genetic Russian Roulette.

Prof Julian Savulescu

Uehiro Chair in Practical Ethics

Director Oxford Uehiro Centre for Practical Ethics

University of Oxford

Cross Post: Fresh Urgency in Mapping Out Ethics of Brain Organoid Research

File 20181120 161641 npf87x.jpg?ixlib=rb 1.1

Written by Julian Koplin, University of Melbourne and

Julian Savulescu, University of Oxford

This article is republished from The Conversation under a Creative Commons license. Read the original article.

 

Researchers have grown groups of brain cells in the lab –
known as ‘organoids’ – that produce brain waves resembling
those found in premature infants.
from www.shutterstock.com

 

Scientists have become increasingly adept at creating brain organoids – which are essentially miniature human brains grown in the laboratory from stem cells.

Although brain organoid research might seem outlandish, it serves an important moral purpose. Among other benefits, it promises to help us understand early brain development and neurodevelopmental disorders such as microcephaly, autism and schizophrenia.

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Cross Post: What If Banks Were the Main Protectors of Customers’ Private Data?

Written by Carissa Véliz

Dr Carissa Véliz, Oxford Uehiro Centre research fellow, has recently published a provocative article in the Harvard Business Review:

The ability to collect and exploit consumers’ personal data has long been a source of competitive advantage in the digital economy. It is their control and use of this data that has enabled the likes of Google, Amazon, Alibaba, and Facebook to dominate online markets.

But consumers are increasingly concerned about the vulnerability that comes with surrendering data. A growing number of cyberattacks — the 2017 hacking of credit watch company Experian being a case in point, not to mention the likely interference by Russian government sponsored hackers in the 2016 US Presidential elections — have triggered something of a “techlash”.

Even without these scandals, it is likely that sooner or later every netizen will have suffered at some point from a bad data experience: from their credit card number being stolen, to their account getting hacked, or their personal details getting exposed; from suffering embarrassment from an inappropriate ad while at work, to realizing that their favorite airline is charging them more than they charge others for the same flight.

See here for the full article, and to join in the conversation.

Announcement: Oxford Uehiro Prize in Practical Ethics

Graduate and undergraduate students currently enrolled at the University of Oxford in any subject are invited to enter the Oxford Uehiro Prize in Practical Ethics by submitting an essay of up to 2000 words on any topic relevant to practical ethics.  Eligibility includes visiting students who are registered as recognized students, and paying fees, but does not include informal visitors.  Two undergraduate papers and two graduate papers will be shortlisted from those submitted to go forward to a public presentation and discussion, where the winner of each category will be selected. 

The winner from each category will receive £300, and the runner up £100. Revised versions of the two winning essays will be considered for publication in the Journal of Practical Ethics, though publication is not guaranteed.

To enter, please submit your written papers by the end of 6th February 2019 to rocci.wilkinson@philosophy.ox.ac.uk. Finalists will be notified in mid February. The public presentation will take place in 8th Week, Hilary term 2019, on Tuesday 5th March. Please save this presentation date, as you will need to attend if selected as a finalist. 

Detailed instructions 

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The Dangers of Biography

By Charles Foster

A friend of mine has written a brilliant and justly celebrated biography. I am worried about her, and about her readers.

The biography is brilliant and engaging precisely because of the degree of rapport the author has established with her subject, and the rapport she brokers between her subject and her readers. What is the cost of that rapport?

My friend has had to keep the company of her (dead) subject for years. Her book is an invitation to others to keep that company for hours. Two ethical questions arise. Continue reading

Listen Carefully

Written by Stephen Rainey, and Jason Walsh

Rhetoric about free speech as under attack is an enduring point of discussion across the media. It appears on the political agenda, in various degrees of concreteness and abstraction. By some definitions, free speech amounts to an unrestrained liberty to say whatever one pleases. On others, it’s carefully framed to exclude types of speech centrally intended to cause harm.

At the same time, more than ever the physical environment is a focus of both public and political attention. Following the BBC’s ‘Blue Planet Two’ documentary series, for instance, a huge impetus gathered around the risk of micro-plastics to our water supply, and, indeed, how plastics in general damage the environment. As with many such issues people have been happy to act. Following, belatedly, Ireland’s example, plastic bag use has plummeted in the UK, helped along by the introduction of a tax.

There are always those few who just don’t care but, when it comes to our shared natural spaces, we’re generally pretty good at reacting. Be it taxing plastic bags, switching to paper straws, or supporting pedestrianisation of polluted areas, there is the chance for open conversations about the spaces we must share. Environmental awareness and anti-pollution attitudes are as close to shared politics as we might get, at least in terms of what’s at stake. Can the same be said for the informational environment that we share? Continue reading

Online Sales and Differential Pricing.

Written by Neil Levy

When it was revealed (more than a decade ago now) that Amazon was charging different consumers different prices, based on information that suggested either that they had higher incomes or a greater willingness to pay for a specific item, there was widespread outrage. Amazon quickly backed down and Jeff Bezos apologised. Today, Amazon says that it does not charge people different prices based on the personal data it collects about them. Many other online retailers make no such promises, and canny shoppers check prices using incognito mode on their browsers, using a VPN, and/or deleting cookies. Continue reading

Response from David S. Oderberg to “Against Conscientious Objection In Health Care: A Counterdeclaration And Reply To Oderberg”

I am grateful to Prof. Savulescu and Dr Giubilini for taking the time and care to respond in detail to my Declaration in Support of Conscientious Objection in Health Care. I also thank Prof. Savulescu for giving me the opportunity to reply to their lengthy analysis. The authors make a series of important criticisms and observations, all of which I will face directly. The topic of freedom of conscience in medicine is both contentious and likely to become increasingly urgent in the future, so it is as well to dispel misunderstandings, clarify assertions and respond to objections as thoroughly as possible. That said, I hope I do not try the reader’s patience by discussing Giubilini and Savulescu’s objections point by point, in the order in which they raise them.

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