Medical and research groups warn it’s currently “inappropriate” to perform germline gene editing that culminates in human pregnancy

1. Editing the human genome brings us one step closer to consumer eugenics
2. Cautious but proactive approach to gene editing urged by multiple organizations
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1. Editing the human genome brings us one step closer to consumer eugenics

Dr David King
The Guardian, 4 Aug 2017
https://www.theguardian.com/commentisfree/2017/aug/04/editing-human-genome-consumer-eugenics-designer-babies
[links to sources at the URL above]

* Hijacked by the free market, human gene editing will lead to greater social inequality by heading where the money is: designer babies

“Hope for families with genetic conditions”, and “scientific breakthrough”: that is how headlines are proclaiming a project that modified human embryos to remove mutations that cause heart failure. But anyone who has concerns about such research is often subjected to moral blackmail. We are regularly lumped in with religious reactionaries or anti-abortion campaigners.

I am neither. If you peel away the hype, the truth is that we already have robust ways of avoiding the birth of children with such conditions, where that is appropriate, through genetic testing of embryos. In fact, the medical justification for spending millions of dollars on such research is extremely thin: it would be much better spent on developing cures for people living with those conditions. It’s time we provided some critical scrutiny and stopped parroting the gospel of medical progress at all costs.

Where genetic engineering really can do something that embryo selection cannot is in genetic enhancement – better known as designer babies. Unfortunately, that’s where its real market will be. We have already seen that dynamic at work with the “three-parent IVF” technique, developed for very rare mitochondrial genetic conditions. Already, a scientist has created babies that way in Mexico (specifically to avoid US regulations) and a company has been set up with the aim of developing the science of designer babies.

Scientists who started their careers hoping to treat sick people and prevent suffering are now earning millions of dollars creating drugs to “enhance cognitive performance” or performing cosmetic surgery. We already have consumer eugenics in the US egg donor market, where ordinary working-class women get paid $5,000 for their eggs while tall, beautiful Ivy League students get $50,000. The free market effectively results in eugenics. So it’s not a matter of “the law of unintended consequences” or of “scaremongering” – the consequences are completely predictable. The burden of proof should be on those who say it won’t happen.

Once you start creating a society in which rich people’s children get biological advantages over other children, basic notions of human equality go out the window. Instead, what you get is social inequality written into DNA. Even using low-tech methods, such as those still used in many Asian countries to select out girls (with the result that the world is short of more than 100 million women), the social consequences of allowing prejudices and competitiveness to control which people get born are horrific.

Most “enhancements” in current use, such as those in cosmetic surgery, are intended to help people conform to expectations created by sexism, racism and ageism. More subtly, but equally profoundly, once we start designing our children to perform the way we want them to, we are erasing the fundamental ethical difference between consumer commodities and human beings. Again, this is not speculation: there is already an international surrogacy market in which babies are bought and sold. The job of parents is to love children unconditionally, however clever/athletic/superficially beautiful they are; not to write our whims and prejudices into their genes.

It’s for these reasons that most industrialised countries have had legal bans against human genetic engineering for the last 30 years. Think about that for a moment: it’s pretty unusual for societies that normally put technological innovation at the centre of their policies to ban technologies before they’re even feasible. There have to be very good reasons for such an unprecedented step, and it’s not to do with “protecting embryos”. It’s to do with the social consequences.

Genetically modified crops are a good comparison. Faced with a similarly irresponsible absolutism from the scientific community – as well as with the obvious competition for fame and profit – the green movement and the left felt they had to take the issue of GM food into their own hands. Now it looks like it’s time to campaign for a global ban on the genetic engineering of people. We must stop this race for the first GM baby.

• Dr David King is a former molecular biologist and founder of Human Genetics Alert, an independent secular watchdog group that supports abortion rights.
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2. Cautious but proactive approach to gene editing urged by multiple organizations

Science Daily, 3 Aug 2017
https://www.sciencedaily.com/releases/2017/08/170803123100.htm

* Medical, research, and counselling groups issue statement on germline genome editing

An international group of 11 organizations with genetics expertise has issued a policy statement on germline genome editing in humans, which recommends against genome editing that culminates in human pregnancy; supports publicly funded, in vitro research into its potential clinical applications; and outlines scientific and societal steps necessary before implementation of such clinical applications is considered.

Published August 3 in The American Journal of Human Genetics, the statement was jointly authored by the American Society of Human Genetics (ASHG), the Association of Genetic Nurses and Counsellors, the Canadian Association of Genetic Counsellors, the International Genetic Epidemiology Society, and the National Society of Genetic Counselors. It was also endorsed by the American Society for Reproductive Medicine, the Asia Pacific Society of Human Genetics, the British Society for Genetic Medicine, the Human Genetics Society of Australasia, the Professional Society of Genetic Counselors in Asia, and the Southern African Society for Human Genetics.

"Our workgroup on genome editing included experts in several subfields of human genetics as well as from countries with varying health systems and research infrastructure," said Kelly E. Ormond, MS, CGC, lead author of the statement and Professor of Genetics at Stanford University. "Given this diversity of perspective, we are encouraged by the agreement we were able to reach and hope it speaks to the soundness and wider acceptability of our recommendations," she said.

The CRISPR/Cas9 system, a genome editing tool introduced in 2013, has quickly become widely used in genetics research due to the ease with which it can be customized and its effectiveness across cell types and species. There is considerable interest in using this tool in somatic cells -- to develop cell-based therapeutics, for example -- as well as in germline cells, the focus of this statement and an ethically more complex issue because of potential effects on not just the treated individual but also future generations.

"While germline genome editing could theoretically be used to prevent a child being born with a genetic disease, its potential use also raises a multitude of scientific, ethical, and policy questions. These questions cannot all be answered by scientists alone, but also need to be debated by society," said Derek T. Scholes, PhD, ASHG Director of Science Policy.

After considering these issues and the current state of the science in germline genome editing, the statement authors agreed that:
* At this time, it is inappropriate to perform germline gene editing that culminates in human pregnancy
* There is currently no reason to prohibit in vitro (outside of a living organism) germline genome editing research, with appropriate oversight and consent, or to prohibit public funding for such research

Further, they agreed that before any future clinical application of germline genome editing takes place, there should be:
* A compelling medical rationale to use this approach
* An evidence base to support its clinical use
* An ethical justification
* A transparent and public process to solicit and incorporate stakeholder input

"As basic science research into genome editing progresses in the coming years, we urge stakeholders to have these important ethical and social discussions in tandem," said Professor Ormond.

Story Source:
Materials provided by American Society of Human Genetics.

Journal Reference:
Ormond KE et al. ASHG policy statement on human germline genome editing. The American Journal of Human Genetics, 2017 DOI: 10.1016/j.ajhg.2017.06.012