Gene Editing: why good science and good ethics must march hand in hand. Debate in the House of Lords.


 

 12.57 pm: January 30th 2020

 

Lord Alton of Liverpool (CB)

 

My Lords, the whole House will want to thank the noble Baroness, Lady Bakewell, for giving us the opportunity to discuss this hugely important topical but also morally important question, which raises grave issues regarding the science and ethics of what we might do, especially regarding eugenics, to which the noble Baroness referred.

I particularly endorse the remarks that were made by the right reverend Prelate the Bishop of Carlisle and the noble Lord, Lord Winston, who made an incredibly important speech in our debate today, asking us to consider the wider issues that are at stake here.

The noble Baroness will have seen the response of the British Society for Genetic Medicine to Matt Hancock and his ambition to conduct genomic sequencing of healthy newborns.

It says that that could be “problematic”, because the genetic code of a healthy newborn

“will only rarely predict future disease accurately”—

a point about which the noble Lord, Lord Winston, reminded us.

The society says that it is important that

“children are not tested for adult onset conditions if there is no effective preventative intervention or treatment in childhood. Issues such as sample and data storage, access and retrieval also require detailed scrutiny”.

It says:

“Such a venture therefore needs to be carefully researched, and the ethical and societal aspects require careful consideration before roll-out to the general population.”

However, other forces are at work.

This morning, I sent a letter to the Minister, the noble Lord, Lord Bethell, from the Royal Academy of Engineering, as well as my response.

I was dismayed to see the phraseology it used in talking about gene editing, citing factors such as

“economic activity and sustainable and resource-efficient solutions to the societal challenges faced in food, chemicals, materials, water, energy … and environmental protection.”

If applied to humans—which has yet to be excluded—I admit that the language employed in the academy’s letter sounds rather disturbing. For example, it uses words such as “exploiting”, “explosive”, “market pull and technology push” and “commercialisation and industrialisation”.

The Royal Academy of Engineering’s report also focuses on commercialisation to the apparent exclusion of ethical discussion, apart from a glancing reference to consumer choices in clothing.

Reference has been made in your Lordships’ House to earlier debates on the 1990 legislation, the establishment of the Human Fertilisation and Embryology Authority and the use of mitochondria.

It is important to say in the context of such debates that we should not tantalise or raise expectations unduly.

During our debates in your Lordships’ House on mitochondrial replacement, we were told that there would be cures and that they were imminent.

What progress has been made on clinical use since the licences were granted by the HFEA?

It is an interesting precedent in the context of today’s debate.

One of my last contributions as a Member in another place before standing down was in a debate on genetics and embryology. I said:

“Legislation cannot be value-free or ethically neutral. A dirigiste or disinterested approach—marketplace genetics—simply would not do.”—[Official Report, Commons, 19/7/1996; col. 1444.]

So I cheered when, in December 2018, the World Health Organization established an expert panel to develop global standards for the governance and oversight of human genome editing. Its consultation closes on 7 February.

A year ago, in an article in Nature magazine, 18 scientists and ethicists from seven different countries called for

“a global moratorium on all clinical uses of human germline editing — that is, changing heritable DNA (in sperm, eggs or embryos) to make genetically modified children.”

My noble friend Lord Patel referred to this point earlier; I endorse entirely his call for a global moratorium for at least a five-year period. The scientists warned against using tantalising arguments to justify the risks and pointed to unknown dangers, including attempts to correct or modify susceptibility to one disease and unwittingly opening the way to another.

They said:

“It will be much harder to predict the effects of completely new genetic instructions — let alone how multiple modifications will interact when they co-occur in future generations. Attempting to reshape the species on the basis of our current state of knowledge would be hubris.”

They warned of

“marketing pressure to enhance their children.”

They warned:

“Genetic enhancement could even divide humans into subspecies.”

They said that implications for

“future generations could have permanent and possibly harmful effects on the species.”

Very significantly, Jennifer Doudna, one of the two scientists jointly responsible for CRISPR-Cas9 gene editing technology, is cautious about its use in humans and calls for prudence. Her co-discoverer and co-inventor, Emmanuelle Charpentier, has far stronger reservations.

She urges us to look for alternative approaches and, along with her colleagues, says that

“germline editing is not yet safe or effective enough to justify any use in the clinic.”

She says that, even with experience, study and future research,

“substantial uncertainty would probably remain.”

Against this background, around 30 countries currently have legislation that directly or indirectly bars all clinical uses of germline editing. Although a regulatory approach, which has been referred to, and an international treaty—perhaps mirroring those on chemical and biological weapons—is what I prefer, I recognise the challenge of securing such international agreement.

Of course, UNESCO signally failed to create a legally binding convention outlawing human cloning.

However, we should at least attempt to secure voluntary pledges to prohibit the clinical use of human germline editing while a moratorium is in place.

I like others’ suggestion of a global genome editing observatory to track developments and foster widespread debate.

I welcome the Minister’s response to that proposal.

The urgency of tackling the wild west of marketplace genetics was illustrated by the way in which, in late 2018, the Chinese biophysicist, He Jiankui, ignored ethical and scientific norms in creating the twins Lulu and Nana, who were referred to earlier.

His use of gene editing on embryos was not a correction of any existing disorder but an attempt to immunise the twins against HIV—an attempt at enhancement that appears to have introduced novel mutations. On 4 December, the Guardian warned:

“China gene-edited baby experiment ‘may have created unintended mutations’.”

Initial approbation turned to condemnation; as we know, He Jiankui is now in jail.

The Chinese Academy of Sciences is to be commended for its robust and unequivocal condemnation of He’s activities, which, it said, represent

“a gross violation of both the Chinese regulations and the consensus reached by the international science community. We strongly condemn their actions as extremely irresponsible, both scientifically and ethically.”

I hope that the logic of that argument will be extended when we look at issues such as DNA profiling and, although it is wider than today’s debate, when we think about the million Uighurs incarcerated in Xinjiang, all of whom have had their DNA profiled. I wrote to the Minister about this; although it is outside the scope of today’s debate, I hope that he will reply to my points and place a copy of that correspondence in the Library.

As the noble Lord, Lord Winston, reminded us, this is a week in which we commemorate terrible events.

In December 1946, the so-called Doctors Trial opened the eyes of the world to the way in which medics and scientists had committed appalling and vile crimes against humanity.

It must always be our objective to ensure that good science and good ethics march hand in hand and always go together.

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My Lords, before the noble Lord concludes, I pressed him during the debate to reply to the correspondence that I sent him about DNA profiling. Can he undertake to place that in the Library of the House when he has answers?

The noble Lord, Lord Alton, is entirely right. I shall be glad to write to him on DNA profiling. It is felt to be a little outside the scope of this debate but I will be glad to place such a letter in the Library, as requested. I thank each and every noble Lord who has spoken today for their contributions, and I look forward to this important subject being revisited in the future.