Exaggerations and Misrepresentations have no place in Science Policy Debates

by test 15. February 2013 01:44

Yesterday Intelligence Squared held a debate (watch it in its entirety here) on whether we should prohibit genetically engineered babies.  Arguing for the motion were CRG Board Chair Professor Sheldon Krimsky  and Robert Winston, professor at Imperial College London.  Arguing against the motion was Nita Farahany, professor at Duke University and a member of the Presidential Commission for the Study of Bioethical Issues and Lee Silver, professor at Princeton University. 

 

The debate quickly turned to focus on mitochondrial disease, a group of disorders caused by dysfunctional mitochondria, the organelles that generate energy for the cell and a new technique for treating such diseases that would, for the first time, allow the creation of babies whose genes have been intentionally altered by replacing the mitochondrial DNA. In focusing on this, and exclusively this element of genetic engineering, opponents of a ban managed to avoid any debate over genetic engineering purely for enhancement purposes. Indeed, Professor Silver seemed to distance himself from the more controversial opinions he espoused in his book, Remaking Eden: How Genetic Engineering and Cloning Will Transform the American Family.

 

Yet scientific debate requires honesty about the state of the science; opinions may differ about how fast new developments are to come, the meaning of current research or the social and ethical implications of its promotion, but any policy discussion requires that the public be given an accurate understanding of what the scientific consensus is about a particular technique, and its limitations.

 

It was therefore disarming to watch Professor Farahany, who as a member of the Presidential Commission stands in a position of helping to set science policy, misrepresent the state of the science in order to promote her position; that lifting a ban on genetically engineering children, at least in some cases, was the more prudent course.

 

Professor Farahany argued for “a middle ground of prudent vigilance” in allowing genetic engineering to continue.  Of course, anyone who is familiar with the Presidential Commission’s work generally knows that this meaningless catch phrase has come to characterize several of their recent recommendations for the governance of new biotechnology developments, particularly controversial ones.  Indeed Professor Farahany and the Commission used the same language of middle ground prudent vigilence to determine that concrete and immediate safety testing and regulation were unnecessary for the burgeoning science of synthetic biology, which some have labelled “extreme genetic engineering.” Indeed it was during the Commission’s report on synthetic biology that the term “prudent vigilance”, which is more practically translated as “wait and see”, was born.

 

Professor Farahany went on to argue that by prohibiting mitochondrial transfer, the US would be left behind and women would be driven to “back alleys” and overseas.  While it would be interesting to learn exactly which “back alleys” geneticists lurk to ply their trade, the fact that a technique would be driven overseas otherwise does not command us to adopt it.  The U.S. and many countries prohibit human cloning, and while that has driven some scientists to independently attempt some research in more hospitable environs, their research has been universally shunned by the scientific community- not envied.  Indeed it is the legitimizing of technologies that is more likely to drive people overseas, as countries with poor human rights records try to compete with the U.S. by offering individuals seeking to circumvent regulatory hurdles (such as organ donor lists) or cost barriers (such as surrogacy) the opportunity to purchase those “products”-necessarily at the expense of the populations subject to such “tourism.”

 

Professor Farahany went on to state that genetic engineering is no different “from the partners we choose” and even likend it to taking supplements such as folates.  But Professor Winston took particular umbrage to her claim that this technique has already been the subject of major and significant studies and that the scientific consensus was that it was safe-that it had even been “greenlighted” in the UK.  Of course that is far from the truth, as Professor Winston pointed out, mitochondrial replacement techniques are being analyzed in the UK but certainly not “greenlighted”.  UK proponents of such techniques, while optimistic, have recommended a cautious approach requiring more research before the techniques can be considered safe and effective for clinical use.

 

They do so because even they know that mitochondrial DNA transfer techniques have had only limited study by private researchers without the appropriate oversight and peer review to ensure the findings are sound.  And even then, the long term effects on those children conceived using this technique have never even attempted to be studied.  Indeed, even the greatest proponents of this technique have never ventured to argue, as Professor Farahany did, that “we can altogether avoid the suffering” of those afflicted with mitochondrial disease by allowing clinical use of mitochondrial DNA transfer.

 

As biotechnology continues to develop, the collective challenge of scientists and those engaging in science policy is to ensure that the public and policymakers alike have informed and unbiased coverage of its successes and failures.  No one bears the burden of this challenge more than members of the President’s Commission on the Study of Bioethical Issues.  Scientific debate is both healthy and necessary but exaggerations and misrepresentations of science are irresponsible and have no place in such discussions.

 

Jeremy Gruber

 

 

Comments

2/15/2013 4:41:52 PM #

Farahany

It is also irresponsible to misrepresent a debate that has happened. I appeared solely in my individual capacity to explain why I believe that an outright and complete ban against genetic engineering is too drastic. I focused my remarks on two forms of mitochondrial DNA transfer (methods of genetic engineering) - maternal spindle transfer and pronuclear transfer - which have been given the green light to proceed with additional research both by the Human Fertilisation and Embryology Authority (UK's independent regulator overseeing the use of gametes and embryos in fertility treatment and research), and the Nuffield Council on Bioethics. Both of these organizations support moving ahead with open public debate and study of these technologies, rather than out a complete ban on this technology, just as I did in this debate. My personal position - clearly articulated throughout the evening was against a ban outright.

What the debate was NOT about was what the next steps should be in this research, or what oversight is appropriate, if not a ban outright. But I nevertheless explained that I believe a responsible way forward is to study the technology and to make it transparent for open public debate and public oversight about the state of the science and about what limits are appropriate. This middle ground, of public oversight and debate- to determine the responsible uses of genetic engineering rather than banning any further research on it is my personal view only about a responsible step forward for society and for the use of mitochondrial transfer techniques.

Farahany United States |

2/20/2013 12:39:53 PM #

Jeremy Gruber

Professor Farahany,

With all due respect your comments went far beyond calling for more research.   Had you simply argued for more research, I doubt we would be having such an exchange. In fact you spoke at length about and made frequent examples of clinical use, offering emotionally charged stories along with an expert opinion on the consensus that mitochondrial DNA replacement is considered safe and effective- with little use of qualifiers.  There is no consensus on the clinical safety of such techniques.  Professor Winston made these exact same points in the debate.  

As a member of the Presidential Council for Bioethics, your opinion carries significant weight; its simply not enough to claim a personal opinion on a matter that is clearly within the purview of that bodies authority.

Jeremy Gruber United States |

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