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Why I Dislike “Best of” Lists and Eman Update from Liberia

icebergI’m not a big fan of end-of-the-year lists, such as the “top-10-scientific-achievements of the year” and the “top-10-genetics-stories-for-2014.” Science shouldn’t be a popularity contest. I wouldn’t suggest such a list for DNA Science, because:

1. I can’t possibly know about all research from 2014.

2. Others have created those lists.

3. I know how news is generated.

THE TIP OF THE ICEBERG
Those of us who read news releases daily – as science journalists do – didn’t need the recent study published in the British Medical Journal to confirm that these missives often hype research to ridiculous degrees. But it isn’t just exaggeration, headlines that suggest a study in mice is actually in humans, and use of vague terms such as “genetic engineering” that bother me about news releases.

My beef: news releases are a tiny sampling of what’s really happening in science.

256px-Bullhorn_font_awesome.svgResearchers with recognizable names, who publish in journals with high impact factors, and come from prestigious institutions with media machines and relentless PR firms, will be in the news releases that dictate what the public hears and reads. With aggregators rewriting news releases, with blogs linking to blogs linking to blogs, and the unending echoes of twitter and Facebook, we’re continually bombarded with variations of the same information. I’m guilty too.

Add to that chatter the fact that news releases precede online publication that precedes actual publication, it’s little wonder that by the time well-meaning friends send me news articles, it’s as Yogi Berra once said, “déjà vu all over again.” Thanks to writing this blog, now I’m getting pre-news releases!

And get this — there’s now a list of the top 10 science news releases!

Disclaimer: after having successfully avoided ever being on anyone’s “best of” compilation (blog, article, book, whatever), I today find myself quoted on a list of the stupidest startups, which of course links to a blog post.

Rather than writing about what the PR folk want me and everyone else to cover, I’m more interested in the experience of a lone parent who tells me about a child who has an unrecognized disease, or a study far down in the table of contents of an obscure journal, or a poster at a meeting from a post-doc or graduate student.

So DNA Science‘s subject list for 2014 doesn’t parallel the “top 10” lists. And it’s not that the entries on those lists aren’t great. For example, I haven’t gotten around to covering CRISPR (a method of genome editing) just yet – I’m simply overwhelmed with all there is to learn.

Because there’s no plan behind what I write about here, and it is year’s end, I checked. My math skills unfortunately do not extend beyond Facebook likes and Google Analytics.

DNA science covers more zebras than horses.
DNA science covers more zebras than horses.

RARE DISEASES AND WEIRD TECHNOLOGIES
If DNA Science has a focus, it’s rare diseases. Posts combine history, personal accounts, and recent research to tell about inherited immune deficiencies and  blindness, alkaptonuria, Wilson diseaseSan Filippo syndrome, and classic inborn errors of metabolism. DNA Science got an initially inexplicable 13,000 Facebook likes for a post on the rapid-aging disorder progeria, because by chance I hit “publish” just as an embargo broke. It happens.

Several posts went beyond the exome/genome sequencing that gets so much attention:

pink-150x150freezing employees eggs
using stem cells from fingernails
choosing whom to date based on DNA
transplanting turds
tissue engineering vaginas
manipulating mitochondria
probing polar bodies to select embryos

I did 3 or 4 posts each for stem cells, DNA sequencing (exome and genome), gene therapy, and genetic testing. Some posts made connections: when  inherited disease protects against infectious disease and the link between genetic testing and eugenics.

No Ice Buckets or Pink Ribbons for Rare Genetic Diseases said what many were thinking: the ice bucket challenge, although raising funds and awareness, was idiotic. DNA Science posts about ALS research from August 6 and April 3 got far fewer Facebook likes than the one in which I threw cold water on the topic. The intense focus on one disease was agonizing for some rare disease families, but some organizations capitalized on the fleeting attention.

1000 genomeFILM AND TV REVIEWS RULE
According to Google Analytics, far and away the top three posts were:

#1 Dan Brown’s Inferno: Good Plot, Bad Science

#2 How Ebola Kills

#3 Syfy’s Helix: Tired Plot, Bad Science, Fun

I cannot stress enough how badly Dan Brown’s novel Inferno (soon to be a film) and the TV series Helix butchered genetics. The Inferno post got 25,814 unique visitors, and Helix 13,785. Yet my post about the astonishingly accurate Call The Midwife episode about cystic fibrosis got only 2,395 (see the special on TV tonight). That’s famous novelist vs SyFy channel vs PBS. Maybe science is a popularity contest.

Sonn and grandson (4)EMAN IS WELL!
The #2 post, How Ebola Kills, was my #1, with other posts about my “son” from Liberia, Emmanuel Gokpolu.

I introduced Eman in the April 25, 2013 post on World Malaria Day. In contrast to the families with rare genetic diseases, Eman has struggled repeatedly with cholera, malaria, and other highly prevalent infectious diseases. That initial post got few hits. He appeared again, mostly in his own words, on October 23 this year in Eman’s e-mails from Liberia and Eman Reports From Ebola Ground Zero on November 6.

In July, when Eman’s emails became increasingly frantic with the initial burst of Ebola cases, I pitched his story to NPR, the New York Times, even my local newspaper. I was proposing to use his words, not mine, but my timing was off.

Editors here wouldn’t care about Ebola until a man came to the U.S. from Liberia and fell ill. I wouldn’t have guessed last July that Ebola Fighters would be Time magazine’s Person of the Year, but I’m glad the world outside Africa has finally woken up to the reality of our interconnected planet and the spread of infectious disease.

Eman and his family have survived, although his cerebral malaria came back mid-November. With medical school still on hold, Eman has become very involved with public health and the organization Determined Youth for Progress. He wrote on November 8, “our recent campaigns have targeted forgotten communities and elderly people. I believe an elderly person can easily influence his/her children and then their grandchildren. That’s easy in Africa. We had a tough time accessing some of these communities, but the commitment of our team won the day.

11/9: “I had the opportunity to address our President’s son, Mr. Robert A. Sirleaf, about Ebola on thanksgiving day in our community. It was great!! I also got a call from Action Contre La Famine(ACF) to serve as a Volunteer Health Promoter. I’m looking up to this new task. It might take me out of Monrovia to somewhere rural. Health authorities are on the alert for new cases in parts of rural Liberia. It’s no time to relax. We must build upon the gains we have made and strategize better to completely kick out Ebola.”

12/1: “We were able to renovate/construct sick wells in various communities, easing access to safe water for those communities. Our Ebola campaigns are going excellent and so far, no one has contracted the disease where we operate.

We have also decided to have a program for children on Christmas day. There are lots of things to be achieved if this program becomes a possibility. School is not opening just yet, so we have designed programs for the kids keeping in mind the presence of Ebola in our country.”

12/17: “I am in Bomi county, volunteering with ACF, about 2 hours drive from Monrovia. Despite the short distance, it is mostly remote. It was an epicenter at the height of the Ebola crisis, and it is still a hotspot for Ebola due to the fact that it is very close to Sierra Leone. We have been distributing preventive Ebola kits and encouraging people to report themselves as soon as they feel sick. It has been challenging.”

I’m so proud of Emmanuel, and grateful that he has survived the Ebola crisis.

plos_logoThis is my 112th post since DNA Science began on September 27, 2012. Thank you PLOS for the freedom to find my own examples of how genetics and genomics are increasingly affecting our lives. And thank you readers. Happy New Year!

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