Personal Choice is the Agent of Change

When it comes to our physical health, we are the ultimate decision makers.  What we eat, whether we take our meds or not, how much exercise we get, these are some of the choices we make.  The healthcare system repairs our bodies when they are not functioning properly, and electronic devices can provide warning lights to alert us when something may be breaking down, but we are responsible for maintenance, making sure our bodies have what they need to operate.    

Do we have the same level of control over our emotional health? Can we choose what we are exposed to; choose to experience only healthy situations?  No, but we are in control of how we react.   Last week, like so many others around the world, I was thrown off balance by the events in Newtown.  The news of the killing of 20 kindergarten students affected me like an illness, scaring my belief system and decimating my faith in humanity.  The tragic event weighed on me for days as details slowly emerged.  There is no cure for this, no therapy, or medication, no specialist to fix this illness.  Are we helpless?  Is our only option to allow time to disolve this event into a distant memory?

Just as we can be intentional in our decisions to improve our health, so too can we intentionally respond to tragedy in a way that improves and strengthens our emotional health.  26 Acts of Kindness is a movement to honour the lives lost in Newtown.  The idea is to do one act of kindness for each life lost.  The actions are trending on Twitter at #26acts and there is a Facebook page documenting acts of kindness.   You will also find debate brewing on many aspects of the campaign but I want to focus on the positive benefits found in intentional act of kindness. 

Being kind to others and helping out are behaviours we teach our children, we want them to be respectful and polite and to experience the uplifting feeling that comes from selfless acts.  As adults it becomes our responsibility to make sure we continue the behaviours throughout our lives.  

Robert Fulghum got it right and his wisdom, the insights he drew from children just like those in Newtown, was never more relevant. 

All I Really Need to Know I Learned in Kindergarten.  These are the things I learned:

• Share everything.
• Play fair.
• Don't hit people.
• Put things back where you found them.
• Clean up your own mess.
• Don't take things that aren't yours.
• Say you're sorry when you hurt somebody.
• Wash your hands before you eat.
• Flush.
• Warm cookies and cold milk are good for you.
• Live a balanced life - learn some and think some and draw and paint and sing and dance and play and work every day some.
• Take a nap every afternoon.
• When you go out in the world, watch out for traffic, hold hands and stick together.
• Be aware of wonder. Remember the little seed in the Styrofoam cup: the roots go down and the plant goes up and nobody really knows how or why, but we are all like that.
• Goldfish and hamsters and white mice and even the little seed in the Styrofoam cup - they all die. So do we.
• And then remember the Dick-and-Jane books and the first word you learned - the biggest word of all - LOOK.

The decision to participate in 26 Acts of Kindness is irrelevant.  We find these campaigns all around us in times of tragedy.  It is ultimately a small gesture, at a time of year when there is a great deal of focus on helping others.  Will it matter?  Will it do more than make us feel better? Only if it is a catalyst for lasting change.

This New Year’s millions of people will vow to eat better and lose a few pounds.  New Year’s is a trigger for those decisions but maintaining healthy behaviours takes commitment and a change in lifestyle in order to see results.  26 Acts of Kindness is no different, this movement is a trigger.  The lasting influence will only be found in the choices we make as we go forward.   

Make your choices count. 

The Risks and Benefits of Making Genome Data Open and Free

The Globe and Mail kicked off a series,  Our Time to Lead exploring the social implications of genome research in Canada.  Researcher, Dr. Stephen Scherer at Toronto’s Hospital for Sick Children is a champion of Canada’s involvement in the Personal Genome Project (PGP) and for making massive amounts of genome data open and free.

This controversial project has a plethora of risks (over three pages of identified risks, discomforts and harms in the consent form) for potential participants and one identified benefit “Participation in the project will likely provide a unique educational experience for participants”.  The risks range from the stress associated with learning that you have an increased genetic risk for a specific illness  to the risk of someone producing a synthetic copy of your DNA and planting it at a crime scene.  Add to the risks the fact that the analysis of the genome is not guaranteed accurate “The PGP cannot make any guarantees about the accuracy or completeness of any such analysis” and the fact that it will cost you minimum $4,000 (if you live in Toronto) to ensure your successful application will go forward, you have to wonder why anyone would consent to participating.

Yet I am considering it.  This blog is dedicated to advocating for control of personal health information and the genome holds great potential for individuals who want to manage their health, but it is early days for the practical utilization of genome data.  The PGP will advance the practical applications for health care consumers and I applaud that.  In an earlier blog,  My Quantifiable Self I featured John Wilbanks and his work on Pooling our Medical Data.  In his TED talk he speaks to accessing his genome through 23 and Me, a private genome mapping company in California and how he crowd sourced his genome to learn even more through international genome researchers and analysts.  His activities with his genome were very similar to what PGP is proposing.  John is a genome adventurer, I have a lower tolerance to risk.

Here is my dominant issue with participating.  To the best of my knowledge (and I am not a health care provider or scientist) most diseases and illnesses are believed to be caused by both genetic and modifiable risk factors.  Take Alzheimer’s as an example of a disease that has been linked to a specific genetic marker.  In a quick scan of Alzheimers Disease Facts and Figures 2012 published by the Alzheimer’s Association, the genetic risk factor is clearly identified but there are other factors that may contribute to the disease including cardiovascular disease and the modifiable risk factors associated with it (physical inactivity, smoking, poor eating habits). 

If I discovered through genome mapping that I had an increased risk of Alzheimer’s disease I would welcome the opportunity to have my personal health information included in a study that mapped my genetic risk for the disease against the other risk factors in my life.   I would want the legacy of my genome donation to inform future research that links an increased genetic pre-disposition to the disease, to modifiable risk factors.  Unfortunately, as it seems to be structured now, the PGP doesn't allow for that.  While the PGP does require your personal health record and completed medical history, it only includes a point in time picture of your health, not a continual record of health. 

The awareness of increased risk for Alzheimers would inspire me to make changes in my lifestyle, that activity will not be recorded in the data contributed to PGP and therefore will not be measured against my future risk for the disease.  I would want research to show that by managing my health better, I was able to mitigate my risk and beat the odds.  PGP doesn’t allow for that.

If we focus on the genetic in isolation of behavioural and environmental factors, we lose a tremendous opportunity. Why don't we create a genome portal for Canadian’s?  A portal would contain the genetic data of all participants and the managers of the portal would be the conduit between qualified international researchers and our data.  International researchers could identify potential participants and contact them via the portal.  I would much prefer to be provided with opportunities to participate in studies that have been screened by the PGP, studies that my genome and personal health information could provide valuable contributions to rather than putting my entire genome data online with my health history.

As an individual considering my participation in such a study and as an advocate for personally controlled health information, I’m not yet convinced the benefits of my participation in PGP outweigh the risks, but I will continue to watch this important project and perhaps, one day, add my genome for consideration.

Infographic -Online health consumers

Great infographic on the future of online health information!