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Archive for the 'positive genomics' Category

May 23 2010

I want to control my own genetic information

Published by under positive genomics

I posted a letter to the editor in today’s San Diego Union Tribune regarding the Pathway Genomics efforts to sell their personal genomics kits, advocating that people have access to their own genetic information.  If they want to turn this over to their doctors and insurance companies, that’s fine.  But they should be required to do.  We should be able to access our information anonymously.

Art Caplan,  director of the Center for Bioethics at the University of Pennsylvania, posted a thoughtful letter to editor to the Denver Post saying the opposite – that individuals should only use hospital-based genetic counseling.  Here’s a summary of our differences:

1.  He says genetic counseling is a must, while I say it is an option.

2.  He says that the individual must insert their genetic information – for now and forever – into their medical record.   I say that this is an option.  I say that the individual should have the right to access their genetic results anonymously, independently of any other authorities intervening.

3.  I acknowledge the risk of poor test information, lack of ethnicity-specific results, and risks of drawing broad results from scant data.  However, the best way to mitigate these risks is openness – and public understanding.  Closing off this information to a “walled garden” accessible only to the “priests” of medicine is not going to improve the situation.

4.  This is a little like the controversy between Wikipedia and Encyclopedia Britannica.  He’s advocating the Encyclopedia Britannica approach, and I’m advocating the Wikipedia approach.  Both can coexist, but what I see happening is people trying to legally inhibit the Wikipedia approach, saying the people must use the expertise of the encyclopedia.  I say, let the reader decide.  We have wonderful open access information from Genopedia – the question is whether individuals will have the right to match their personal genetic information with what is online.  Can we do this anonymously and under our own control, or do we have to submit our information to the medical record, insurance companies, and doctors?

5.  I think that we need to be frank about the risks of turning over your genetic information to the patient’s physician and insurance company.  Exposing ones genetic information – permanently and indelibly – is not a step to be taken lightly, particularly in light of the explosive growth of the electronic medical record and break-neck efforts to integrate these records into the National Health Information Network.  I’m sorry, but based on 35 years experience in managing medical information, I don’t think that patient’s privacy and confidentiality are being fully protected.

I’m sure that there are more than a few medical associations are bouncing around the halls of Congress now, lobbying to make genetic information their turf, creating a walled garden of information that only they control.  “People aren’t able to understand this information without our interpretation, so we’ll pass laws requiring you to pay us to interpret it for you.” Just like lay people weren’t qualified to read the bible back in the time of Gutenberg.

Thanks, but I want the choice to decide whether I want to pay hospitals for their interpretation.  Maybe there is some other group that I feel more comfortable using, one that earns its reputation by doing a better job of counseling and making information available.  If my local hospital genetics program is best, so be it.  If I prefer the Mayo Online, 23 and Me, Genopedia, or my own Google Scholar searches, that’s my choice, not theirs.

And no thanks, I don’t accept your requirement that I am required to insert my genetic information in your electronic health record in order to see my own genetic information.  Let’s put in my walled garden, and I’ll invite folks in according to my choosing.

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May 14 2010

Walgreen’s and Pathway Genomics: Delaying the Inevitable

Published by under positive genomics

Just this week, Walgreen’s announced that they would be carrying Pathway Genomics Insight personal genomics testing kit.  Customers at 6,000 stores could by the sample collection kit, send in their saliva sample, and order various genetic tests to provide information about their genetic makeup and tendencies.

Shortly thereafter, FDA put a halt on the process, saying that Pathway hadn’t gone through the approval process; Pathway responded that it wasn’t necessary.  Walgreen’s announced that they wouldn’t be selling the kits.  (23 and Me kits are available at some local San Diego grocery stores, but the FDA doesn’t seem to mind)  I’ll let the legal eagles figure that issue out, but in the meantime, I think that there are some pretty fundamental issues at stake here.

The basic question is, who should own and have access our personal genomic information?   First and foremost, this is MY information about MY body and MY relatives.  And I demand full access to it.  If I want to consult my doctor about it, read the literature myself, or talk with others over the internet about it, this is MY decision.

There are those who say that the average “consumer” isn’t capable of understanding the information provided by genetic testing, and that access should be controlled by a physician “expert.”  First of all, I resent be called a “consumer” of my own information.  I don’t “consume” my height, weight, or blood pressure information – these are just facts about me that I need to pay attention to.   I use various technologies such as scales, rulers, or blood pressure cuffs to measure these things, and I have to be astute as to whether any particular measurement is off base or not.  I also have to interpret this information in my own context.   But this information is not the property of some “expert” intermediary that decides what I can and cannot see (and how much I will pay them to see it).

Imagine some enterprising thugs charging an “entrance fee” to use an otherwise free public park.   Economists call this Rent Seeking behavior.  There are more than a few professional medical societies who are happy to be the gateways to your own genetic information, clamoring that they should stand between you and your information – playing the role of rent-seekers.  Rather than earning their value as someone you voluntarily go to for the information, they would interpose themselves legally, forcing you to use their services whether you need it or not.  Look at our complex, expensive system for buying eyeglasses – its a little like requiring a woman to have a mammogram before buying a brassiere.  Fortunately, the experts haven’t gotten to that level of control (yet).

When Gutenberg invented the printing press, I suspect more than a number of folks looked at his converted wine press and said, “Why do we need all these books.  Hardly anyone can read them.”  His device triggered off a literature/literacy spiral that fueled the enlightenment, one of the most dramatic chapters in the history of civilization.

People were soon free to read the bible, in their own vernacular, on their own.  “How can lay people understand the bible without the theological training and assistance of the priests?” became the hot topic of the day, I’m sure.  Or for a few hundred years.

It is clear that we are just at the earliest stages of this discovery process.  We really don’t know the “nature versus nurture” issues, nor do we know the effects of environment or placebos.  Just what is encoded in the genes and how it affects us is a huge mystery to be discovered, and I’m sure will lead to many surprises along the way.  We do know that it is coming fast, however.   Sequencing the human genome was a huge billion dollar effort in the 1990’s; we can expect to see our own sequences for under $1000 in just a few years (Current genetic tests just sample pre-determined portions of the gene).

This is all a moving target – there are daily announcements of new information about discoveries in genetics.  Yes, its very early, and no, all the information is not going to be correct.  But I want direct access to it myself – and if I want some expert interpretation of it, I’ll ask.  In the meantime, keep the rent-seekers away from my genetic information.

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Mar 29 2010

Congratulations Francisco Ayala on Winning the Templeton Award

Congratulations to Dr. Francisco Ayala, professor at the University of California, Irvine for winning the 2010 Templeton Award.  One of the highlights of my year has been attending the In Light of Evolution conferences that he co-sponsors at the National Academy of Sciences’ Beckman Center. I grew up as the son of a UC professor, so I have known a gamut of many professorial types.  Some have embodied the finest traditions of scholarship and intellectual curiousity.  Others have treated the university as personal playground for activities that would have made P.T. Barnum blush.

Dr. Ayala struck me from the beginning to be a wonderful example of the finest traditions in science.  He is a scholar’s scholar, with a solid history in his field, and an obvious love of being a professor.  He has a focused, compassionate demeanor that more of the younger generation should experience.  In their world of continuous partial attention, it’s probably hard for them to understand the effects of a life-long intellectual focus such as Ayala’s.

I have also found his lectures and writings on Evolution to be the most respectable and scientifically responsible writings on the subject.  He is one of the leaders at the National Academy of Science’s response to the Intelligent Design/Creationism controversy.  He communicates the science of evolution in the mature, engaging manner of a great scientist who is also aware of limits to the scientific method.  Unlike others who seek to win the argument by spreading self righteous indignation, he is able to present the science of evolution in a convincing manner.

The Templeton Award has aroused some controversy:  Richard Dawkins, another great biologist but who is a little closer to the PT Barnum end of the professorial scale, had this to say about the award:

“The US National Academy of Sciences has brought ignominy on itself by agreeing to host the announcement of the 2010 Templeton Prize. This is exactly the kind of thing Templeton is ceaselessly angling for — recognition among real scientists — and they use their money shamelessly to satisfy their doomed craving for scientific respectability.”

I disagree that Templeton Foundation is “craving for scientific respectability.”  I have had numerous interactions with Templeton Foundation, and think that they are providing an extremely valuable service in the advancement of science.  Their particular choice of language makes me a little uncomfortable at times, but I agree with their intent.  I have worked with them as a Sr. Fellow at Civic Ventures, who sponsor the Purpose Prize and the notion of “Encore Careers.”   These $100,000 awards are given to folks over the age of 60 who have started a new pro-social enterprise after the age of 50 – a most remarkable (and growing) segment of our society.  I have seen no trace of “religious” influence on these prizes.  Here is my conversation with Jon Haidt, a self-confessed Jewish Liberal Atheist who won the Templeton Positive Psychology Award.  And here is a video interview of Mihaly Csíkszentmihályi (a bit conflated with my interest in Positive Genomics) who is also active in the Templeton orbit.  I’ve had zero sense of any religious interference in their scientific or philanthropic activities.

I invite a broad range of thinkers to my workshops, looking for a “grounded eclectic” perspective of people who are able to delve deeply in one subject as well as think laterally.  I’ve had pretty hard core atheists as well as dedicated spiritual leaders – an Iraqi-American Imam and and an enthusiast supporter of the US Marines at the same workshop right after the invasion of Iraq, doing an Appreciative Inquiry into positive responses to the war in Iraq.

I frequently end up with groups containing atheists as well as believers in some religion or those who want to talk about spirituality.  I generally find that I can find a middle ground of conversation by substituting “emergence” for “spirituality” in the discussion.   Both will agree that a whole, live cat has emergent properties that are not discernable by looking at the parts of the dissected cat.  We can accept that the emergent properties of the live cat – the whole that is greater than the sum of the parts, and then get on with herding cats rather than getting stuck on what makes a cat live.  This “what is life?” question is indeed a very important question, receiving too little attention, but it can get in the way of other topics.

So congratulations, Francisco Ayala, for your contributions to the science of evolution, its a well-deserved award.

And, congratulations, Templeton Foundation for recognizing it.  I think you are performing a great value to the advancement of science.

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Jan 14 2009

Survival of the Cutest?

Darwin taught us all about the survival of the fittest – the “fitness function” by which life has evolved over the past 4 billion years or so. However, we are the first generations of the first species to reach a point of intelligence that we can understand and affect our own evolution. This is not your grandfather’s evolution. The birth control pill in the 60’s allowed us shift our species’ hormones and triggered a sexual revolution. Our understanding of DNA and the human genome poises us for fantastic new vistas in medicine.

This brings up the question: just what is our new fitness function as we consciously shape our own evolution? The tried-and-true formula that nature has used until now – maximizing the number of your surviving offspring – is not going to work. We won that race, and now have 6.5 billion homo sapiens sapiens on earth. Blindly increasing that number is not going to work.

Scientists in China have just announced that they have sequenced the DNA of the Giant Panda – surely the mark of distinction the millions of species in the world today. But why the panda? According to Jun Wang, the institute’s associate director and professor, they chose the giant panda it’s cute and therefore able to capture the public’s attention.

Never mind that the Panda is one of the most “brittle” species on earth, locked into a single food source (bamboo), and a single climate. But what about the trillions of lowly earthworms, constantly refreshing our soils. Darwin recognized this: “it may be doubted if there are any other animals which have played such an important part in the history of the world as these lowly organized creatures.”

But they aren’t cute.

Perhaps saving the most mediagenic species has a lot of sex appeal to some, but perhaps we need to move to the Survival of the Wisest, not the Survival of the Cutest. A great visionary, Jonas Salk, coined this phrase. I think we need to pay more attention to it.

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Jan 07 2009

James Fowler in Conversation with Tom

This is conversation between UC San Diego Political Scientist James Fowler with Tom Munnecke and Heather Wood Ion on James’ research of happiness, obesity, drinking, and more based on the Framingham Heart Study data. He provides some provocative evidence that social networks might propagate happiness in a contagious fashion, more powerfully than unhappiness. We also talk about the spread of loneliness, ways of researching empathy, centralized “smart center” networks vs. smart edges, group selection, the work of happiness and elevation by Jonathan Haidt, and ways we might construct networks of uplift. Videography by Robert Foxworth, music by Kevin MacLeod. Taped Jan 6, 2009 at the UC San Diego Faculty Club. This video is also archived at the Internet Archives.
See also James’ paper on genetic basis of Social Networks
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Dec 22 2008

Barbara Marx Hubbard in Conversation with Tom

Barbara Marx Hubbard has a conversation with Tom Munnecke about Conscious Evolution, the visions of Jonas Salk, Buckminster Fuller, and Abraham Maslow, her new book about Supra Sex, as well as her vision of a better world.  Jon Haidt appears briefly.  Filmed at her home in Santa Barbara, Ca. Dec. 10, 2008.  Videography by Jeremy Saville, music by Kevin MacLeod.
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Dec 02 2008

Genetics and placebos

Published by under positive genomics

Interesting article on ties between genetics and the placebo effect in Science News

Of the 25 patients who received the placebo, 10 reported reduced anxiety by the end of the study. (Numbers for the treatment group were not released because the trial is ongoing.) Brain scans during the second speech showed their amygdalas were also less active. Genetic analysis revealed that eight people who got relief from the placebo had a particular version of a gene that regulates serotonin production called the tryptophan hydroxylase-2 promoter (TPH2)… This is one of the same genetic variants linked to heightened amygdala activity in healthy people. TPH2 is the first genetic marker tied to any placebo response, the team reports.

Getting back to my rants about Positive Genomics, this is yet another assumption that we can negate the negative to get the positive.  Figuring out genomics in the purely positive is a different quest.

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Sep 20 2008

Deborah Peel of Patient Privacy Rights talks about Genomic Privacy


Deborah Peel of the Patient Privacy Rights foundation talks about the patient information privacy, particularly genomic information, in response to Tom Munnecke’s interview with Esther Dyson This impromtu video was shot after a dinner party in Austin, Tx. with a small digital camera in “movie” mode.

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Sep 13 2008

Positive Genomics

One of the more dramatic revolutions in academia over the past decade has been the advent of Positive Psychology.  Below is an interview I did at Stanford University with Mihaly Csikszentmihalyi at Civic Ventures’ 2006 Purpose Prize Summit (where I am a Sr. Fellow):

What interests me particularly, however, is the notion of what I’ll call positive genomics.  Is it possible to understand the genome in terms of the positive, life-affirming qualities that make us whole, resilient, and adaptive?  Can we find genetic contributors to Seligman and Peterson’ Character Strengths and Virtues? Rather than compiling endless taxonomies, can we find and understand what’s working?  Given the information explosion that we are undergoing, how do we even begin to discover this positive informationOne interesting study of the wellderly seems to be a step in the right direction:

The ‘Wellderly Study’ is a joint initiative between the Scripps Research Institute in La Jolla, California, and scientists at the J. Craig Venter Institute in Rockville, Maryland. It hopes to investigate the genomes of 2,000 people aged 80 or more who take no significant medication and have never suffered from any serious disease.

“We are looking at a cohort that we think is harbouring major secrets. They have disease susceptibility genes, but they don’t get the diseases you would have expected. Something has protected them. We hope to find out what that is,” says study leader Eric Topol, who is director of genomic medicine at Scripps.”

And one of my favorite superstars of academia, Jon Haidt, has written on the emotions of elevation and awe, as well as some tantalizing pieces on the role of moral psychology and religion.

So, how do we bridge the information gap between the petabytes of genomic information inundating us to the notion of beauty, awe, and a a life well-lived?  I’m not quite sure at the moment, but it’s a wonderful question to be asking.  I am sure that we aren’t going to answer this question by breaking things and then looking for what fails.

I’m very open to hearing about other positive genomic research and efforts… mail me at munnecke@gmail.com if you have any suggestions, putting “Postive Genomics” in the subject line of your message.

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Jun 12 2008

Conversation with Esther Dyson

Esther Dyson, chair of EDVentures, talks about her decision to publish her personal genome information, as well as the role of the Personal Health Record. I interviewed her at the Markle Foundation Connecting for Health Conference at Torrey Pines, San Diego, Ca. December 3, 2007. I talked about some of these topics in a paper Inverted Perspectives, Triggering Change I coauthored with Dr. Rob Kolodner in Person-Centered Health Records: Toward HealthePeople

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