miércoles, 27 de enero de 2016

MercatorNet: Designing our descendants: Brave New Britain takes the lead again

MercatorNet: Designing our descendants: Brave New Britain takes the lead again

Designing our descendants: Brave New Britain takes the lead again

British scientists want to alter the human germline with the new CRISPR technology.
Philippa Taylor | Jan 27 2016 | comment 

There will be a number of individuals who will be absolutely delighted to hear that UK scientists are likely to be allowed to genetically engineer human embryos in the lab for the first time, using a powerful and efficient new technology.

Bioethicists John Harris and Julian Savulescu have maintained for years that would-be parents are morally obligated to make genetic interventions on embryos and create designer children: “The human genome is not perfect … It’s ethically imperative to positively support this technology.”

They are not alone. There is publicity and kudos for the scientists heading groundbreaking new research, which in turn attracts the funding to roll in (not something the British like to mention but as one of the American discoverers of the new techniques says in New Scientist, “there is money involved, whether I like it or not”.).

In Brave New Britain, we are becoming known for leading the world in the latest controversial scientific developments, research and therapies for the sick, bravely forging a path that few others are following.

It is that last point that should ring some alarm bells. Not only do very few scientists around the world support this planned use of the new technology (even the two scientists who first developed it!), but most countries that have legislated on it, have banned it.

A brief but important background explanation to the research is needed, as media coverage is not usually clear.

Genome editing is an emerging family of biological techniques that can make precise genetic alterations to cells. However there are different cells that can be altered, either editing the genetic material of “somatic” cells in just one individual patient which do not affect the sperm or eggs (a kind of “one and done” cure) or in “germline” cells within sperm or eggs or early embryos, that pass the genetic changes down to all future children, changing their genetic inheritance.

Using the new technologies with the former (somatic) cells has great potential and is being widely worked on for therapies across the globe. Working on germline cells has until now, been prohibited and widely condemned, because of the many unknown risks it entail for future generations.

This distinction is essential, as opponents of germline engineering are most definitely not against all genome editing, however they are portrayed.

What I want to simply highlight in this blog about the new proposed research that the researcher, Kathy Niakan at the Francis Crick Institute wants to do in the UK is that most scientists around the world would refuse to do it, and most countries would refuse to allow it!

Many of the leading gene-editing companies in the US have clearly stated that they’re aiming to treat genetic disease in one consenting patient at a time, and not do germline editing for prospective parents seeking to tailor the genetic variants (or even disorders) they pass on to their future children.

For example, Edward Lanphier, the CEO of a California biotechnology company, published an article in Nature with colleagues from the Alliance for Regenerative Medicine entitled “Don’t edit the human germline”. They said that creating gene-edited humans is “dangerous and ethically unacceptable” because genetic changes to embryos are heritable and could have an unpredictable effect on future generations.

Recently, Sangamo announced that the FDA had approved its new hemophilia drug application using an in-patient gene-editing therapy (not germline!).

Then, equally interesting, Intellia Therapeutics and CRISPR Therapeutics, two companies founded by the co-discoverers of this new technology, CRISPR, released a statement in December saying:

“The vast majority of genetic and other diseases can be addressed by gene editing of these somatic cells and do not require modification of germline cells … We are dedicated to discovering and developing gene editing-based treatments for serious diseases using only non-germline somatic cells.

This is the greatest area of patient need, where the benefits and risks are best understood, and where the ethical support is unambiguous … We are committed to … refraining from directly modifying germline cells, including sperm, egg or embryonic tissue.’

One of the discoverers of CRISPR, Jennifer Doudna,has signed a statement with other scientists asking for a pause in CRISPR germline research in order to engage in broad public debate: a prudent path forward for genomic engineering and germline genetic modification. She also published an article in Nature just last month saying quite clearly that: “human-germline editing … should not proceed at this time, partly because of the unknown social consequences, but also because the technology and our knowledge of the human genome are simply not ready to do so safely.”

Her co-discoverer, Emmanuelle Charpentier, has gone further, telling the BBC in September: “Personally I don’t think that it is acceptable to manipulate the human germline for the purposes of changing some genetic traits that will be transmitted over generations.” He also told New Scientist in December: “I hope that using the technology with the idea of changing human characteristics will not be pursued … Philosophically and sociologically speaking, I have lots of issues with this.”

Then there is the Director of the National Institute for Health in the US, Francis Collins, arguably one of the most influential scientists in the US, who has stated:

“NIH will not fund any use of gene-editing technologies in human embryos. The concept of altering the human germline in embryos for clinical purposes has been debated over many years from many different perspectives, and has been viewed almost universally as a line that should not be crossed.”

What reasons does he give?

“…the serious and unquantifiable safety issues, ethical issues presented by altering the germline in a way that affects the next generation without their consent, and a current lack of compelling medical applications justifying the use of CRISPR/Cas9 in embryos.”

Why is the UK so keen to pursue this germline research? I suggested some reasons earlier but as US Professor Gina Maranto notes, since the 18th century, the British have been fascinated by breeding, of animals, agricultural and human breeding. It was out of University College London in the 19th century, that Galtonian eugenics sprang (eugenics was coined by Galton to mean “well-born”) eventually gaining support much further afield.

Although after the Second World War the British rejected eugenics, that was not true of all.  IVF developers Patrick Steptoe and Robert Edwards both voiced eugenic aims for their IVF research (“We are entering a world where we have to consider the quality of our children”).

DNA structure discoverers, James Watson and Francis Crick, were both eugenicists. Indeed, Crick advocated sterilisation of the “poorly endowed genetically” to stop them “having large numbers of unnecessary children”. (The link to this new research proposal is somewhat ironic), and in the past couple of decades, a vocal and influential group of neo-eugenicist philosophers and biologists have pushed a eugenics agenda and acted as boosters for germline interventions. I cited just two examples above, Harris and Savulescu.

And if all that weren’t warning enough, Professor Maranto goes on to say that when we look beyond Britain, we see that modification of the human germline has been seen as problematic enough to have been prohibited in over 40 countries. Such interventions are anathema to many people, including scientists, in countries that do not yet have specific policies in place.

As I’ve warned before, a proposal such as this was probably inevitable, given the precedents driving the campaign to create three parent embryos in the UK. We cannot blame the technology itself, which can – and is – being used for many good purposes, and for the understanding and healing of diseases. It is just that, as with so many other technologies, it is one that can be used for both good and evil. We urgently need wisdom in discerning the differences, as we live in our Brave New Britain.

Philippa Taylor is Head of Public Policy at the Christian Medical Fellowship in London. She has an MA in Bioethics from St Mary’s University College and a background in policy work on bioethics and family issues. This article has been republished with permission from her blog.
- See more at: http://www.mercatornet.com/articles/view/designing-our-descendants-brave-new-britain-takes-the-lead-again/17507#sthash.ka9D6kaD.dpuf

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