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." 

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


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