Monthly Archives: December 2008

Web Bolsters Parent Advocacy

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Parents have proven to be some of the best health advocates. The exponential expansion of newborn screening in the past few years is a prime example of the huge impact that parents can have on health policy. As with most other things, the internet and social media have served to exacerbate the impact of the parent advocate. The popularity and strength of the “mommy-blogger” is testament to this. But can a powerful parent advocate be dangerous?

There are a couple of examples that I have been thinking about lately. The juxtaposition between these two cases serve to highlight, in my opinion, the necessity and potential pitfalls of parent advocacy.

Addi and Cassi Hempel, Neimann-Pick Cpicture-5

I first heard about Addi and Cassi, the twins with “childhood alzheimer’s” (officially Neimann-Pick C or NPC), last Christmas. My sister forwarded me a link to addiandcassi.com after she’d heard about them through a friend of a friend. Addi and Cassi’s parents had set up the website so that friends, family and strangers could stay informed and share their thoughts, prayers and wishes for the twins. Since that time, it seems that Addi and Cassi are everywhere! Their parents, Chris and Hugh Hempel, have collaboarated with various groups, including the National Human Genome Research Institute (NHGRI), clinicians who specialze in NPC, international researchers and other parents. They have fought to push research, funding and awareness forward. Most recently, the twins were featured in the November issue of The Scientist magazine (registration required for viewing).

The Hempels message is one of hope and unity. They have managed to facilitate collaboration among an interdisciplinary group of researchers and scientists– quite a feat in the peer-reviewed world of academia. In learning about this family, you can’t help but feel that the NPC community would be at a huge loss without their work. And it has only been one year.

Jenny McCarthy and Autismjenny-062707-a

Jenny McCarthy and her son were featured on the cover of US Weekly a few months ago. The tagline read “Beating Autism: How I Saved My Son.” I found the accompanying article particularly disturbing.

As is widely known, Jenny McCarthy attributes her son Evan’s autism to his vaccinations:

“I don’t think autism is genetic. I have a family history of genetic vulnerability that my kid can’t detox vaccines…In 1983, when kids only got 10 shots, autism was 1 in 10,000. Now kids get 36 shots, and the odds are 1 in 150 they’re on the autism spectrum… When Evan went in, I was scared…They put the needle in his leg and he screamed. I felt a chill. It was like I was watching destiny happen, loss of eye contact, loss of language.”

There are several flaws in the above argument, the most obvious being that countless other things have changed for children between 1983 and today. Secondly, published studies do not support McCarthy’s vaccination hypothesis. But scrolling through the personal testimonials on generationrescue.org, a McCarthy endorsed website, I understand why parents of children with autism would find the information compelling. They cite scientific evidence and describe a study they conducted comparing the rates of autism in vaccinated and unvaccinated children. McCarthy criticizes the CDC for not conducting similar studies on a national level and encourages parents to see beyond the “rhetoric of public health officials.”

On more than one occasion I’ve heard physicians talk about treating children in hospital with diseases such as measles, which had become somewhat obsolete since the MMR vaccination became mainstream. When the message being delivered is not based on sound science and could potentially harm children, I think parent advocacy can be dangerous. It can also serve to alienate people. Who is advocating for those parents who tried the special vaccination detox diet and couldn’t “recover” their child from autism?

Social media, Social responsibility

Much in the same way that Jenny McCarthy has leveraged her “celebrity,” social media gives parents the opportuniy to amplify their voices and their cause. With this opportunity, however, comes a social responsibility to ensure that your message is comprehensive and based in truth. I believe that health-related advocacy work requires some collaboration with health proffessionals– even when their opinion differs from your own. I hope that parent advocates can take a page from the Hempels’ book, in order to make sure that their much needed work saves lives, rather than harms them.

Internets Fix Grammys

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Conclusive evidence that the web has wholly transformed the music industry: Pitchfork concludes the Grammy nominees don’t suck.

Unfortunately for network execs the kids who made those acts popular are more likely to watch performances on-line the next day than sit through the live, outdated award show format.

Here’s a solid breakdown for anyone still wondering how Lil Wayne leads with 8 nominations. The guy is just a plain digital hustler.

Emotionally Intelligent Marketing

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Open and Human (Especially in Recession)

A few months back Daniel Pink gave an insightful presentation on his idea of Emotionally Intelligent Signage. Watching it, and following new examples of people-smart messaging on his blog, I’m struck by the obvious crossover learnings.

The concept of Emotional Intelligence (EI) – one’s ability to perceive, control, and evaluate emotions – was popularized by Daniel Goleman’s 1995 book Emotional Intelligence: Why It Can Matter More Than IQ. Today the principles of the idea are as relevant as ever not only for individuals, but for the world of communications.

In the presentation Pink says Emotionally Intelligent Signage (EIS) both demonstrates and encourages empathy. Not surprisingly empathy is quite the buzz word in marketing today. I think, underscoring this idea, Emotionally Intelligent Signage (EIS) rests on two of the same fundamentals as New Marketing (NM):

  1. Humanness – Both EIS and NM are about treating people like people. They’re about showing your personality and keeping it real; about grasping your audience’s feelings and understanding their motivations
  2. Openness – Both are about respecting the reasoning of your audience. They’re about full disclosure, helping people understand “the why” and letting them form their own opinions and make decisions accordingly

As for real business examples, look no further than the Zappos Case. Widely known for “digital humanism”, CEO Tony Hsieh would tell you their success has little to do with on-line behavior. Rather, it’s their endless commitment to customer service that will help them sell $1 billion in shoes this year. The public and actionable company values drive home their dedication to humanness and openness in service. Further, Hsieh truly leads by example – he lives his brand’s values and expects the same of his employees. Here are a couple clear examples:

  • Tony Hsieh is personable and accessible. How many CEO’s of billion dollar companies share their email publicly? How many share their Thanksgiving dinner?
  • Last month when forced to lay-off 8% of its workers, Hsieh conveyed how difficult the decision was and published the company-wide note. The whole thing turned into a lovefest… Can you imagine this happening even just 10 years ago?

This second point seems very relevant as the principles of Emotional Intelligence are particularly fitting in hard times. Amidst uncertainty, when decision making is toughest, we seek comfort in 1) human connection, and 2) things we understand – which humanness and openness respectively address. I have a hunch these merits of Emotional Intelligence outlast the economic troubles, though.

GenoHype! Genetics and Athleticism

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The ultimate Nature vs. Nurture debate

boltThe world of professional sports is littered with examples of athletes who defy the laws of natural science and make human marvels seem effortless. Take Usain Bolt, for example. The 6’4″ Jamaican sprinter not only made history by breaking both the 100m and 200m record in the same Olympic games, but his laid back attitude and gesturing made it seem easy.

So, what is known about genetics and athletic ability? In searching the published literature, it is clear that there is a huge amount of research into gene variants and athletic prowess. Most of these studies involve mouse models and have not yet been clearly translated to human athletic performance. There is one exception, that has been replicated by several different researchers in different populations: The ACTN3 gene, or the “sprinting gene” as it has been dubbed by the media. Basically, studies have shown that olympic athletes are more likely to have a particular ACTN3 variant in these genes, over non-elite athletes.

I guess I shouldn’t have been surprised by this New York Times article that ran yesterday. The article features Atlas Sports Genetics, a company that is currently offering genetic testing for the ACTN3 gene, and are marketing the test specifically towards children. In their words “knowing what a person is born with can ensure they develop into the best athlete they can be.”

Strangely enough, I just finished reading the chapter in Malcolm Gladwell’s Outliers in which he deconstructs the notion that professional athletes are simply gifted with natural athletic ability, but are rather conditioned for athletic prowess through a combination of chance (e.g. what month one happens to be born in), circumstance (e.g. being in the right place at the right time) and practice (approximately 10,000 hours).

A certain amount of athletic ability is innate. However, ACTN3 represents one out of potentially hundreds or thousands of genes that contribute to natural athletic ability. Take these hundreds of gene variants and couple them with a child’s physical and social environment and personal experiences, and looking at the ACTN3 variant on its own seems somewhat inconsequential to a child’s athletic development. Consequently, making decisions based on this gene variant alone seems absurd.  

Kids play sports, because sports are fun.

I while ago I posted about the need for the genetics community to at least recognize some of the cool and recreational aspects of the field. In some capacity, I think there is an opportunity for genetic testing of ACTN3 to fall into the realm of recreational genetics.  However, in my opinion Atlas Sports Genetics has got it wrong. This information should not be used in children, and should not be used to guide parents decisions about their children’s recreational time.

Even though research has shown an association between athletes and an particular ACTN3 variant, I find it hard to believe that a parent would want to determine their child’s athletic path based on the results of a genetic test. I would hope that a child’s personality, desires, likes and dislikes would take precedence over a genetic test result. I can’t help but think that genetic testing for “athletic genes” in kids will only serve to undermine the most fundamental purpose of sport and play: fun.