Sun, Aug 05, 2018 - Page 7 News List

Britain’s medical ethics
have lapsed dangerously

The Nuffield Council on Bioethics has endorsed human genome editing, but it is not clear whether the benefits outweigh the risks

By Donna Dickenson

Illustration: Constance Chou

On July 17, the UK’s influential Nuffield Council on Bioethics implicitly endorsed “heritable genome editing,” declaring the practice of altering the DNA of a human embryo “morally permissible” under certain circumstances.

The council’s report was the product of 20 months of consultation with many experts in the UK and beyond, and also built on a prior report to which I contributed testimony.

However, I have serious concerns about the new report’s conclusions. Simply put, I do not believe the recommendations adequately consider all the ethical or medical risks of manipulating heritable genes. Nor do I think the report gives sufficient weight to the question of whether sufficiently strong safeguards ever could be put in place to prevent the technology’s misuse.

The Nuffield report focuses on “germline” gene editing, or genetic alterations of human embryos and gametes that are passed on to future generations. This type of gene modification is not legal in the UK, although “somatic” genome editing — performed on the non-heritable genes of individual patients — is permitted.

What makes the report controversial is its precedent-setting argument. Germline gene editing is not approved under international law: both the Council of Europe’s Convention on Human Rights and Biomedicine — although the UK is not a signatory — and UNESCO’s Universal Declaration on the Human Genome and Human Rights prohibit the practice.

Moreover, the overwhelming majority of countries that have ever considered legalizing it have eventually rejected the idea outright and have no plans to change their position. Only the UK has come close.

In 2015, British lawmakers approved a form of germline modification known as “mitochondrial donation” — commonly referred to as “three-parent” in vitro fertilization (IVF).

Eliminating genetically caused conditions in future children might seem a welcome goal, particularly to couples with a family history of such diseases.

However, we already have techniques, such as “preimplantation genetic diagnosis” of embryos, which can prevent affected children from being born. That is all germline genetic editing can do: It cannot cure disease or save lives.

Against these limited benefits, we must weigh major risks such as “off-target edits.” Some observers have likened germline genetic editing to hitting “find and replace all” on a computer. Yet not only do we lack an understanding of all future risk scenarios; there is no “undo” button. We are binding future generations to our own state of incomplete knowledge.

I am not alone in expressing these views. In December last year, the Royal Society published a survey of public attitudes toward DNA sequencing and genome editing. While respondents were generally supportive of procedures for the treatment of life-threatening illnesses, many were adamant that every available option should be exhausted before genome editing was tried.

People also wondered how genetic technologies might affect social inequality and how countries would guard against the emergence of “corporate-type monopolies.”

The new Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) technique, unlike some previous types of gene editing, is relatively cheap, and if bans were relaxed, biotechnology firms would likely rush to fill the market.

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