Mixed Nuffield Council Report Too Aspirational on Human Genetic Modification

It’s an odd confluence of events this week that (A) the Nuffield Council, an ethics think tank, gives a thumbs up in a new report to heritable human genetic modification that would probably include using CRISPR in the same week that (B) a new paper reports that CRISPR can cause unpredictable genomic damage and several other concerning reports about possible CRISPR technology side effects or challenges have come out in the last few months.

Talk about bad timing.

They would probably counter my intro paragraph by saying they considered ethical factors, not so much the science, but I think these need to be considered together.

The Nuffield Council report is a mixed bag with some solid recommendations. But given its influence, the green light to heritable human genetic modification is likely to do harm. I haven’t read all 200 pages and have focused on a summary or “short guide” of the report so I may have missed something, but this post is my initial take.

Here are some of the headlines around the world about the report:

• Designer babies on horizon as ethics council gives green light to genetically edited embryos
• UK Ethics Council Says It’s ‘Morally Permissible’ to Create Genetically Modified Babies
• Genetically modified babies given go ahead by UK ethics body
• Genetically modifying future children isn’t just wrong. It would harm all of us (opinion piece by Marcy Darnovsky)

While again the Council report is sensible in many ways and does set many conditions (quoted below) for when heritable human genetic modification would be OK, it is problematic overall. There’s an aspirational undertone to their report that suggests they have placed too much emphasis on hypothetical potential benefits and haven’t weighted the range of risks sufficiently.

Here are the conditions:

“We conclude that the potential use of heritable genome editing interventions to influence the characteristics of future generations could be ethically acceptable in some circumstances, so long as:

• “it is intended to secure, and is consistent with, the welfare of a person who may be born as a consequence of interventions using genome edited cells; and

• it is consistent with social justice and solidarity, i.e. it should not be expected to increase disadvantage, discrimination, or division in society.

• We recommend that research should be carried out on the safety and feasibility of heritable genome editing interventions to establish standards for clinical use.

• We recommend that social research should be carried out to develop greater understanding of the implications of genome editing for the welfare of the future person.

• We recommend that before any move is made to amend UK legislation to permit heritable genome editing interventions, there should be sufficient opportunity for broad and inclusive societal debate.

• We recommend the establishment of an independent UK body to promote public debate on the use of genomic and related technologies to respond to societal challenges; to help to identify and understand the public interests at stake; and to monitor social, cultural, legal, and health impacts.

• We recommend that governments in the UK and elsewhere should work with international human rights institutions, such as the Council of Europe and UNESCO, to promote international dialogue and to develop a framework for international governance of heritable genome editing interventions.

• We recommend that heritable genome editing interventions should only be licensed on a case-by-case basis subject to: assessment of the risks of adverse clinical outcomes for the future person by a national competent authority (in the UK, the HFEA); and strict regulation and oversight, including long-term monitoring of the effects on individuals and social impacts.”

I personally think the second and maybe some of the other of these conditions above are likely impossible to really meet, but who decides when a condition has been met?

Also, remarkably genetic modification in humans for trait enhancement apparently would be OK with them — see the what-the-heck 3rd bullet point in the passage below from the “short guide” to the report:

“If heritable genome editing proves to be a viable reproductive technology, it is possible that its repertoire of uses could expand. …It is possible that genome editing could be used in future for:

I guess at least they are direct about being okay with enhancement.

I’ve written quite a bit on this blog about concerns related to heritable human genetic modification and designer babies. I’ve also written a whole book related to heritable and other uses of CRISPR in humans called GMO Sapiens, which is targeted both to the public and scientists interested in the topic. In addition, I did a TEDx talk about envisioning a complicated future with genetically modified children, which has more than 1.2 million views (above).

To be clear, I’m in favor of responsible research using CRISPR and other genetic modification technologies in human stem cells, which my own lab conducts, and potentially on a limited, careful basis of the in vitro use of CRISPR in viable human embryos limited to the lab if there is a compelling scientific rationale and ethical oversight. However, the heritable, reproductive use of genetic modification technologies like CRISPR in humans is an entirely other matter, which I oppose. It is too risky on so many levels ranging from medical to societal, including eugenics. Powerful, established, and safe technology already exists to avoid many genetic diseases as well in the form of embryo screening technologies such as preimplantation genetic diagnosis or screenings.

What do you think of the Nuffield report?