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Exaggerations and Misrepresentations Have No Place in Science Policy Debates

by Jeremy GruberCouncil for Responsible Genetics
February 15th, 2013

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. 

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