Public Supports Using Genetic Data for Most Purposes

A recent Wall Street Journal Online/Harris Interactive poll of 3091 U.S. adults shows widespread support for using genetic data for many purposes, such as research, medicine, and fighting crime.

Attitudes were very clearly pointing in the other direction for health/life insurance and employment purposes. Hands off insurers and employers, the U.S. public doesn’t want you to have their data! Another indication that for adoption of personal health records to succeed in the U.S., they’ll need to come from outside the system.

Poll results below the jump.

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GenomeSweep

Back in 2004, Life Science Insights surveyed a group of genome experts for opinions on the date when cheap human genome sequencing would be available.  Here is a summary of what they said:

Forty percent of the genome experts interviewed by LSI believe that the $1000 genome will not be reached within ten years.  This compares to a mere 17% who believe it will be here in five years. Ten percent of respondents said that scientists would not even reach the $100,000 genome within ten years. Clearly, there is disagreement over how fast these technologies are developing.

Predictions are fun to watch play out over time, particularly when expert opinions vary wildly.  Remember GeneSweep?  The experts in this contest made predictions about the number of genes in the human genome.  They ranged from 25,000 - 300,000.  Here is a snapshot of the distribution of bets, dating from March 2003:

Genesweep

With such wildly different opinions about the future of personal genomics, perhaps a Long Bet is in order.  GenomeSweep anyone?

Zachary Zimmerman, The Promise of the $1000 Human Genome (PDF). Life Science Insights, October 2004.

GeneSweep History from Cold Spring Harbor.

Internet Archive snapshot of GeneSweep page from March 2003.

In case you’re wondering, the winner of GeneSweep was Lee Rowen from the Institute for Systems Biology in Seattle.  Her prediction was 25,947 genes.

Vizu Poll: To Share or Not to Share?

Web Poll by Vizu: See what the world thinks

For more information check out the Personal Genome Project or I2B2.

IBMs Pledges to Protect Genetic Privacy of Workforce

Developing story from the New York Times:

I.B.M., the world’s largest technology company by revenue, is promising not to use genetic information in hiring or in determining eligibility for its health care or benefits plans. Genetics policy specialists and privacy rights groups say that the I.B.M. pledge to its more than 300,000 employees worldwide appears to be the first such move by a major corporation.

Steve Lohr. "I.B.M. to Put Genetic Data of Workers Off Limits" October 10, 2005

Update: Over at IBMs excellent collaborative blog on the future of healthcare, HealthNex, IBM’s Chief Privacy Officer Harriet Pearson introduces the genetic privacy policy and says "I hope the fortuitous coincidence of these public events [Eddy Curry case, IBM's policy, etc] — and many
more that will certainly arise in the weeks, months and years ahead –
will promote the kind of discussion around the future importance of
genetic security and privacy that our policy initiative today was
intended to generate."

Update2:  Amy Barrett. "IBM’s Smart Stance on Genetic Testing" OCTOBER 11, 2005

Consumers: Cost of Health Care?

Medical consumerism fact of the day:

While consumers can guess the price of a new Honda Accord within $300,
those surveyed were off by $8,100 in their price estimations for a
four-day hospital stay.

Just exactly how much does it cost for a day in the hospital?

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Public Opinion on Genetic Discrimination

Do you agree with the following statement:

"Genetic testing is not a good idea because you might have trouble getting or keeping your insurance."

In a recently published study, nearly 87,000 people were asked this question and 40% agreed.  The authors note  "[d]espite this concern, people were willing to be tested, and we didn’t see any clear sign that this concern was a large

deterrent to being tested."  Interestingly, they found that participants from states with legal protections against genetic discrimination were more concerned about discrimination than residents from states with no legal protections.

Hall, Mark A et al. "Concerns in a primary care population about genetic discrimination by insurers." Genetics in Medicine. 7(5):311-316, May/June 2005. (subscription only)

"Study finds research participants concerned about genetic discrimination" Medical News Today. May 26, 2005.

clinEncode

NHGRI is launching a pilot study called clinEncode:

…researchers will sequence a portion of DNA from 400 seemingly healthy volunteers and try to discern each person’s unique genetic risk factors for disease. They also plan to study the reactions of the volunteers to learning these results…The 400 volunteers will donate DNA and undergo a battery of tests, including blood pressure measurements and white blood cell counts. [NHGRI’s Eric] Green and his colleagues will sequence the same 1% of each person’s genome, regions that are already being intensely studied by basic researchers.  Green’s team plans to report back any variations spotted, including ones that may explain a person’s current and future health status. It’s not clear how people will react to such results. Previous studies involving genetic testing for specific diseases have suggested that people can handle bad health news.

Pennisi, E. "Gene Sequence Study Takes a Stab at Personalized Medicine" Science. May 20, 2005. (subscription only)

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

Giving credit where it is due

The Dolan DNA Learning Center at Cold Spring Harbor is working with Clemson University to create a South Carolina DNA Learning Center.  From this news story:

"The mission of the Dolan DNA Learning Center is to prepare students and families to thrive in the gene age," said [David A.] Micklos, [executive director of the Dolan DNA Learning]. "We envision a day when all elementary students are exposed to principles of genetics and disease risk; when all high school students have the opportunity to do hands-on experiments with DNA; and when all families have access to genetic information they need to make informed health care choices. The center at Clemson will serve South Carolina, preparing students and families for the future."

Legislators should be added to this list of people that need to prepare for the future.  After a presentation at the Annual Meeting of Women in Biotechnology in late 2002, ethicist Arthur Caplan took a question from the audience about whether genetic testing would someday become routine during visits to the doctor.  Here is part of his response:    

"And molecular medicine will [get absorbed into the diagnostic culture] too. Someday if we don’t screw this up, I do believe you will go to the doctor’s office and get your molecular printout and be told that these drugs are bad for you, and those drugs are good for you, and this is a risk thing for you, and you should do this and that for your lifestyle change, and all that. And that’s great; I think that day is great. But I think it’s far off. People are not, we just mapped the genome. Most people don’t know where their genes are. Most people don’t want to eat genes. Most people think. I went and talked to a group of legislators about something and I asked them where their genes are, and about a quarter of them thought they were in their gonads. It’s partial credit. About a quarter of them thought they were in their brains. Which is very optimistic. And then, half of them knew they were kind of scattered around their bodies.

   

But I always laugh, I’m sorry to insult journalism here for a second, but you know all those pictures they show you of DNA on Time magazine? No o ne knows where that stuff is.  They have no idea. It’s like, and then we have this DNA thing and we replace it, and this is what genetic engineering is. We take the segment and we move it over here. And people are thinking, where is that? Where is that going on? I mean, is that like in my head or in my testicles or what are they talking about? I mean, they don’t know. So, a while for that to come. A while is what I would say. Not soon. The industry has to position itself for a lot of ignorance. A lot of fear, and some fear-mongering. There are critics of genetics out there all
over the place who want to use that to slow the industry down. For a variety of reasons."

It is important, as a society, to encourage some degree of scientific literacy.  For individuals eager to maximize personal well being, health literacy is an obstacle even for the educated.  These two indexes are of course interrelated. 

Here is the info for Caplan’s paper quoted above:
Arthur Caplan "Are We Ready for Mass Genetic Testing: Ethical and Social Hurdles" Annual Meeting of Women in Biotechnology. October 16, 2002. (Meeting transcript in pdf)

Medical consumers want to read own medical records

Is there any interest in by medical consumers to read their own medical record?  EHR vendors take note, a recent survey of 4500 adults suggests that they do.  Of those that responded, 36% were "very interested" and 43% were "somewhat interested." 

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