[For the last two years, the Sanger Institute has been running a series of events looking at the relationship between society and personal genomics. This is a report on our most recent event, a debate on celebrity genomes between two campus faculty. In addition to the live debate and in-house questions, we also took comments on Twitter with the #CelebGenomes tag.]
In the second campus debate on “Society and the personal genome” Ewan Birney (proponent) and Paul Flicek (opponent) went head to head to debate the motion: “This House believes that celebrity genomes are a useful contribution to science and society”. The debate was well attended, with standing room only in the 150-seat lecture theatre. Prior to commencing the debate, Jeff (as Chair) took a poll of the audience, finding an even split among those who agreed (30%), disagreed (38%) and were undecided (32%). The same result was obtained using both high-tech interactive voting keypads and the more traditional method of estimating the decibels of a shouting crowd.
Opening arguments
Ewan opened by highlighting the two points of argument in this debate: 1) are celebrity genomes useful to science and 2) are they useful to society? He argued in response to the first question that famous genomes such as Desmond Tutu, James Watson and Craig Venter have already been used and widely cited in scientific research. To answer the second, he argued that for science to be useful for society, however, there needs to be a dialog between science and society. Society needs a narrative to understand the science, and celebrities are often where society turns for these stories. We need more people of every kind to talk about their genomes but the people that other people will notice are the celebrities.
In his opening argument, Paul made an important distinction between the genomes of “celebrity scientists” (James Watson, Craig Venter), and the genomes of popular celebrities (Simon Cowell, Ozzy Osbourne). The former may be well known in the scientific community, but if we are talking about “celebrity genomes”, we should really be talking about people who a significant proportion of the population know about. And the issue with these celebrities is that their genomes, and the insights they have into their genomes, are not more important than for any non-celebrity. He contrasted celebrity genomes with the example of Michael J. Fox’s Parkinson’s activism: Fox is a good celebrity advocate because of the unique insights that come from suffering from a condition that most people do not have, but everyone has a genome, so what makes celebrities more qualified to speak about genomics? Especially when we know celebrities are often terrible at communicating science to the public, as illustrated by an example of reality TV-star Nicole ‘Snooki’ Polizzi from the Jersey Shore who thinks the ocean is salty due to whale sperm.
Andrew Miller “Do A-listers have more A bases? #CelebGenomes”
Questions from the floor
After the opening statements it was time for some discussion. Jeff opened the discussion with a question about whether or not it was fair for society that the rich and famous can have their genome sequenced and interpreted, when they have done nothing to deserve it. Ewan retorted that that statement could be made about any piece of new technology, and that is a function of how our society is set up. Paul agreed that being rich has always been an advantage in every society. How we take this into the future is up to us.
The debate soon opened up to questions from the floor:
Q: Celebrities have a long history of bringing attention do different causes. Why shouldn’t there be a place for them in raising awareness for genomics?
Paul argued that if we want celebs to comment on genomics then we have to take the good with the bad. Celebrities often provide information which is misleading or flat wrong. As an example he gave Simon Cowell who recently got his genome sequenced for £150,000 and informed everybody that this has predicted he would live to be 92.
Ewan raised the point that we need to consider how to facilitate the dialog between science and society. He argued that we use stories to inform, and when Simon Cowell dies before reaching 92 people will look back on the story and will try to learn what happened.
Q: We need more people to take part in genome sequencing. Is getting celebrities involved not a good way to attract people to these scientific projects?
Paul‘s view was that celebrity involvement is not always positive for science, citing the example of the controversial Wakefield paper linking the MMR vaccine to autism. The paper and its results have been proven to be scientifically flawed and retracted. However, this did not deter celebrity activist Jenny McCarthy from actively campaigning to stop vaccinations. In his view, this is an example of how scientific research can be misrepresented by people who have a high profile but no relevant research background, and highlights that a substantial proportion of the general public view her as a reputable source of information.
Ewan‘s perspective was that although you run the risk of celebrities getting the information wrong, we can’t tell celebrities or society how to think or shape their worldview. But we need to keep the channel of communication open.
Q. A story is not the only way to get information out, and getting the wrong information out can be dangerous. Education is important.
Ewan agreed that education is of core importance, but for the broader audience information must be placed into a narrative.
However, Paul said that celebrities have always played a role but the fact that they are the most admired people now is new and to only communicate through a celebrity is a disaster.
Q: Is it that just the wrong celebrities are being sequenced and do you think there will be a good celebrity role model? Like for instance Barack Obama.
Paul acknowledged that although it is possible there could be good examples, it seems unlikely that these people would be will be willing to share their medical records. People get their genomes sequenced for their own ego not to help science. He also pointed out that most celebrity genomes will not come with the right phenotype data, if any. Obama will never let his genome be sequenced as his genetic variants might be used against him. We saw how his birth certificate was scrutinized; imagine if his genome was released.
Ewan raised the question of whether Desmond Tutu had his genome sequenced for the celebrity value or because he was a leading African? He also highlighted what he saw as a good example of where genome sequencing might fold in nicely is the program ‘Who Do You Think You Are?’. When people are looking to find out more about their ancestry their genome could tell an interesting story. This would get the message out about the power and limitations of the genome: it is informative not deterministic.
Closing statements
In closing statements Paul emphasized onced more that the complex issues of genomics, society, medicine, environment and disease risk are weighty issues which will be drowned out by celebrity voices and celebrity egos, as has frequently happened in the past. Ewan stated that, with regards to his first question, he thinks that we can agree that even in a small amount celebrity genomes have contributed to science. The second question is more complex. When we have a dialog with the society we do so through a proxy such as a celebrity. This will happen one way or another, and only by engaging with these celebrities will we make this dialog positive with regard to the science.
To wrap it all up, Jeff took a final poll of opinions. Because he hates fair comparisons, Jeff split the question into two parts: the contribution of celebrity genomes to science and the contribution to society. The first poll showed that 33% felt that the impact was positive on science, 62% felt it was negative and 4% were undecided. The second poll showed that 41% agreed that the impact was positive on society, 51% felt it was negative and 8% were still undecided. Over the course of the debate a large number of undecideds seemed to have been convinced that celebrity genomes were a negative impact on science and society, leading Jeff to declare Paul Flicek the winner of this debate.
Isn’t Michael J. Fox into Parkinson, rather than Alzheimer?
Good point! Fixed.