Sept. 2010: Vanity Genomes

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Director's Page Archive: Vanity Genomes and the Future of Medical Sequencing

September 10, 2010

Five-time, Oscar-nominated actress Glenn Close had hers done. So did Nobel Peace Prize winner Archbishop Desmond Tutu. The double helix-writing geneticist James Watson did not want to know about everything that was in his. But everyone wants to know what is in British heavy metal rocker Ozzy Osbourne's — it might help explain how he is still alive today after decades of dissolute living.

I am talking about their genome sequence, of course. They have all had (or are having) their genomes sequenced and have made that fact — and in some cases the sequence itself — public.

Sometimes the sequencing was done, in part, for publicity. For example, the company Illumina wanted to showcase its new DNA sequencing technology, so it sequenced Glenn Close's genome — the first such example for a publicly identified woman. Another company — 454 Life Sciences, now absorbed as a division of Roche Diagnostics — sequenced the DNA of the man who put DNA on the map: Watson co-discovered DNA's double-helical structure, won a Nobel Prize for this achievement, and later became the founding director of NHGRI.

In other cases, researchers from nations like China, India, and South Africa each achieved notoriety for being the first to sequence the DNA of individuals from their region of the world. Even a lab specializing in ancient DNA at University of Copenhagen reportedly has permission from the family of the Lakota Sioux holy man and war chief Sitting Bull to attempt to sequence his genome from hair samples.

All of this is cool, at first glance. Such "vanity genomes" are fun to talk (and joke) about, and they bring genome sequencing to the public's attention. At the same time, they run the risk of sending the wrong message to some, making it seem that all the years of hard scientific struggle and serious investments in developing DNA sequencing technologies were meant for studying the rich and the famous. It is not. Exploration of the human genome is for everyone — it requires the study of people from all walks of life and society, and it offers the ability to teach us important things about our past and our future.

We can trace our genomes from ancestors as far back in evolutionary time as when self-replicating organisms squirmed in the mud of primordial Earth. And our modern-day genomes are beginning to teach us about our medical future — whether we inherited genetic variants that might turn a pancreas cell into a lethal cancer or whether our neurons might deteriorate into dementia. Or, conceivably, we may discover a genetic combination that will help to keep our cells healthfully humming along for more than 10 decades.

As usual, however, technology races ahead of society's sensibilities. It is worth considering the original rationale for sequencing the human genome — to advance human health. DNA sequencing technologies are not supposed to be just for celebrities, and the publicity generated by high-profile 'vanity genomes' runs the risk of distracting us from the potential medical advances offered by genome sequencing and trivializing key issues raised by the science. For example, what will patients want to know about their risks for diseases that run in their family? James Watson did not want to know about the genes that might put him at risk for Alzheimer's disease. If you know you are genetically at increased risk for lung cancer, will you stop smoking? These are among the important things that we have yet to fully explore.

The Human Genome Project and now the field of genomics aim to understand the inner workings of the human cell so as to develop new medical approaches for improving the health of us all. This is not overpromising, as some have charged. There is much to be done, but we are making great strides. We are on a productive path to an era of genomic medicine, as long as we avoid getting too distracted by who is walking down the red carpet to get their genomes sequenced next.

Past Comments on the September 10, 2010 Page

  1. M. Calanthe Wilson-Pant, M.D. (December 1, 2010, 06:53):
    I could see the benefit of sequencing the genome of great humanitarians--The Dalai Llama or Mother Theresa, and many lesser known ones, and looking at the variants of those genes involved in brain development. How is their brain wired differently from the average, say, geneticist? Then compare to those with bipolar disorder. Could be fascinating results. Have you ever wondered what Jesus' genome looked like?

  2. Oscar (September 29, 2010, 13:10):
    Great!

  3. Deep Blue Sea (September 22, 2010, 18:33):
    Thanks Dr. Green for injecting some sense into this issue. You make a good point about technology racing ahead of society's sensibilities. This is just uncharted territory for public figures, that they can have their genomes sequenced - they can brag about it, how cool it is. I hope those who have come forward use their power and influence to echo your sentiments and say this is about advancing human health and not about doing something cool.

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