mutations in one of them and would greatly benefit from knowing it. My prediction is that in the next 20 years we’ll see whole genome sequencing incorporated into medical care as a routine diagnostic tool which will be useful for those relatively unusual individuals who have a major medical condition explained primarily by an underlying genetic lesion. And perhaps most excitingly, we will finally see a productive fusion of genomics with public health. Ubiquitous, population-level sequencing of the handful of genes that actually matter to human health will identify those relatively rare individuals – the roughly 1% - who have mutations that strongly predispose to an eminently preventable disorder (e.g. various cancers or aneurysms). Thus, over the next 20 years, sequencing which is broadly applied to the asymptomatic population but targeted to focus on the handful of genes that really matter for preventing disease, has the potential to save lives and perhaps money (though we should be skeptical of claims that any new technology will actually reduce health care costs; they rarely do). The public health potential for robust sequencing will also likely be realized in the near-term as it is increasingly
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used to identify the severe recessive diseases for which prospective parents are both carriers. The application of genomics in public health contexts will inevitably create friction. When couples have ready knowledge of their carrier status for hundreds of severe recessive diseases, the most common use of this knowledge will be, as it is now, abortion of the affected fetus. And as more individuals undergo whole genome sequencing for legitimate healthcare purposes or in the rather silly pursuit of “recreational genomics,” some will inevitably find out things that they wish they’d never have discovered (like the fact that they have an exceedingly high risk for a truly awful and untreatable disorder). Such friction, unavoidable with the broad application of any new advance, makes it all the more important that we look with a critical eye upon what genomics really has to offer, apply it with care and don’t over-hype the benefits of this amazing new technology. nnn James P. Evans, MD, PhD, is Bryson Distinguished Professor of Genetics and Medicine at the University of North Carolina School of Medicine.
Genetic Justice: DNA Data Banks, Criminal Investigations, and Civil Liberties National DNA databanks were initially established to catalogue the identities of violent criminals and sex offenders. However, since the mid-1990s, forensic DNA databanks have in some cases expanded to include people merely arrested, regardless of whether they’ve been charged or convicted of a crime. The public is largely unaware of these changes and the advances that biotechnology and forensic DNA science have made possible. Yet many citizens are beginning to realize that the unfettered collection of DNA profiles might compromise our basic freedoms and rights. Two leading authors on medical ethics, science policy, and civil liberties take a hard look at how the United States has balanced the use of DNA technology, particularly the use of DNA databanks in criminal justice, with the privacy rights of its citizenry.
Sheldon Krimsky is a founding member of the CRG Board of Directors, Professor of urban and environmental policy and planning at Tufts University, and author of eight books and over 175 published essays and reviews. Tania Simoncelli is a former member of the CRG Board of Directors and Science Advisor at the American Civil Liberties Union. She currently works for the U.S. Food and Drug Administration.
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