Advice from Vikings: Public Opinions Matter

A new poll by PARADE/Research!America recently asked 1000 Americans what they think about genetic testing and biobanking.  Here is a brief summary of a couple key findings:

Q: "Would you be willing to be genetically tested to help doctors diagnose and prevent disease?"
A: 57% yes

Q: "Would you be willing to contribute a sample of your DNA to a national databank to be used only for health related research?"
A: 48% Yes

Q: "What concerns, if any, do you have about genetic testing?"
A: 39% No concerns 
  ~15% concerned with misuse/abuse of info
  ~15% either "don’t know" or "don’t understand"
  ~11% are concerned with privacy   

In the grand scheme of things, how much does current public opinion of these issues really matter?  Luckily, there is a real-life case study unfolding in Iceland that should be instructive in answering this question.  In his editorial in the September Technology Review, David Rotman had this to say about the force of public opinion in shaping the success of the Icelandic biotech DeCode Genetics

"The beginnings of deCode, however, were mired in controversy, most of it centered on worries over privacy and a general unease about granting a single biotech company ownership over a population’s genetic legacy (see “Your Genetic Destiny for Sale,” TR April 2001). The good news…is that almost everyone…in Iceland, from cab drivers to patients, now embraces the effort.  What’s more, the experiment seems to be working: deCode reports its pipeline is bursting with potential drugs…

Revisiting [the DeCode Genetics] story yields a few clear lessons. First, a country’s public attitude to technology does matter. Second, and just as important, given the right climate, public views can evolve. Efforts comparable to deCode’s in the United States and the United Kingdom met similar fears and were either quickly shut down or, as in the case of the U.K. Biobank, slow to get off the ground. (The U.K. Biobank now says it will get fully under way in September 2005.) To their credit, the people of Iceland dealt with the issues, compromised, and efficiently pushed ahead with what many now recognize as vitally important medical research. Perhaps it was a courage in the face of the unknown inherited from Viking ancestors."

Ralph Snyderman of Duke University sees a related problem with attitudes toward genomics in medicine: thinking of it too much in terms of the next era in medicine and not enough in terms of here and now.  In a recent Parade article, Dr. Snyderman had this to say:

"People think that genomics will have an impact in their children’s lifetime, but it is happening now. I urge them to rush to take advantage of it for the sake of living longer, healthier lives." 

Resources:
PARADE/Research!America poll results

Dianne Hales. "Treatment Tailor-made For You." Parade. September 19, 2004. (html or pdf)

David Rotman. "Getting the Whole Story." Technology Review. September 2004, p.7 (subscription)

CDC’s Family History Initiative

Michael Specter’s 1999 New Yorker article on DeCode Genetics.
More papers on DeCode Genetics, or how about video.

See the Duke Prospective Health Program
….

Here are some other findings from the poll worth mentioning since they will surely blow the minds of historians in 50 years:
Have you ever used email to communicate with your doctor or health care provider?
90% No

Have you ever asked your doctor or another health professional to let you see your medical records?
61% No

How useful would it be if you could look at your personal medical records online?
50% Not useful or don’t know

Nosocomephobia

The fear of hospitals is everywhere.  If anything, at least awareness of major safety concerns is growing.  The fact that it pops-up in unexpected places, like in the preface of a book on telecom terminology, is evidence of this fact.  Here is the passage I speak of:

HOSPITALS ARE DANGEROUS PLACES
Hospitals are dangerous places.  If you ever have to go to one, NEVER go without someone who will personally supervise everything about your presence there, the whole time you’re there.  A skeptical spouse works better.

This is from the ninteenth edition of Newton’s Telecom Dictionary (2003).  The twentieth edition (2004) contains a similar passage.  No mention of the subject matter in the in the previous 18 editions(at least not in the 18th edition, when I became a Newton neophyte). 

For those of you unfamiliar with the book, do yourself a favor and buy a copy.  If you use a computer, you need it.  If this computer is on a network, you really need it.  Regardless of whether you are a novice or an illustrious member of the digiterati, it is a wonderful resource to have around.  Newton issues an updated book every year and I buy it every year.  I frequently find myself dipping into it in pursuit of one definition and not resurfacing for an hour.   

For those of you interested in nosocomephobia, why it exists, what to do about it, and other health care related commentary, check out The Piper Report.

IBM’s Genomic Messaging System

IBM has a new technology called the Genomic Messaging System.  Barry Robson, a research scientist at IBM’s Watson Research Lab, is the lead author of a recent paper on GMS, published in the Journal of Proteome Research.  Here is snippet from Robson’s paper ($):

…Genomic Messaging System (GMS)…may be considered as a proposed specification for an approach with an emphasis on a specific language for embedding supporting information and management functions in streams of DNA data. Naturally, the details may evolve, but the concept of adding human and computer-generated content (such as annotation) into the DNA sequences, in a more general and powerful way, appears to be a useful one. The proof-of-concept code employs Perl 5 with capabilities for XML management although, as described below, the approach is not confined to XML-based records. Components have been also been recently encoded in Java. The description also includes the Clinical Laboratory Messaging System (CLaMS) as a straightforward modification in which the background genomic default usage is switched off so that it occurs at same rank level as other clinical data. GMS represents technology involved in the domain of information management of patient genomic information and associated clinical information. In particular, the current implementation is concerned with the compression, encryption, and transmission aspects of clinical and genomic data, including bringing data together such as the clinical record and the patient DNA results from the sequencing laboratory. The form of information transmitted is versatile and is capable of storing and transmitting an entire Integrated Medical Record (IMR)."

IBM’s IMR, SHAMAN, and GMS sites.

The GMS paper:
Barry Robson and Richard Mushlin. "Genomic Messaging System and DNA Mark-Up Language for Information-Based Personalized Medicine with Clinical and Proteome Research Applications" J. Proteome Res. ASAP Web Release Date: 22-Jul-2004

By the way, IBM Healthcare and Life Sciences just release another newsletter.  Although I can’t find any version of it online, you can get many if not all of the same papers here.

Entrepreneurial Adolescence: US Genomics

“But as it became clear that personalized medicine, while a powerful vision, wasn’t going to revolutionize the healthcare system overnight, U.S. Genomics entered a wrenching transitional period. I call it entrepreneurial adolescence, which has the following symptoms: The investors get impatient, the founder is booted, a chief executive with more business experience parachutes in, other executives are shuffled, and the company starts searching for near-term revenue possibilities. All that is happening at U.S. Genomics.”

From this Boston Globe article by Scott Kirsner. The near-term revenue possibilities are no longer high throughput genome sequencing, as they once were.

Hitting the 15 minute target: MinuteClinic

MinuteClinic.  You must like the sound of that.  In and out and fifteen minutes?  One can only hope this isn’t just marketing hype.  Coming to a Target near you?  Maybe.

Californians for Personal Genomes

"Californians for Universal Voluntary Individual Genome Sequencing (CUVIGS) today announced its effort to qualify a state initiative that would fund the genome sequencing of all California residents."

From this page.  I don’t know if this is even legitimate.  I’ll post more when I learn more, but at the moment CUVIGS gets only one hit (i.e. a googlewhackblatt).

Edinburgh agrees with London: Better to Swallow than Spit

In order to reduce the high incidence of subway employees being spat upon, at the rate of 100 cases per year apparently, London authorities last year turned to simple DNA kits containing latex gloves, swabs, and an evidence bag. Bus drivers and now traffic wardens of Edinburgh, Scotland have also taken up the DNA kits to deal with their own spitting menace.

London Underground introduces DNA testing kits to staff. Press release of the London Underground. August  15, 2003.

John Innes. DNA kits to combat spitting menace. The Scotsman. April 21, 2004.

Alastair Dalton. Traffic wardens to be given DNA ’spit’ kits. The Scotsman. August 14, 2004.

(Thanks to reader Peter for the pointer)