Did journalists overstate the promise of the human genome project?

 Note that in the Nature Network Boston report on Tuesday’s panel on the human genome project, Broad Institute chief Eric Lander says that journalists naively reported that the genome map would rapidly lead to cures for many diseases.  

 Lander said that expectations for the impact of the research were  “fabulously naïve. Journalists wrote about how we were going to have drugs for all these disease in the next decade. Somebody was smoking something. This was just nuts.”

They say journalism is the art of verification. So we went back to try to find some of these stoner reporters and their overblown claims by reviewing reporting in The New York Times and USA Today. 

Although the paper on the research was published in 2001, the results were announced in the summer of 2000 at a White House press conference. A June 27  NYTimes package entitled ”READING THE BOOK OF LIFE: A Historic Quest; Double Landmarks for Watson: Helix and Genome” seemed pretty measured: 

The human genome project may be the gateway to the biology and medicine of the 21st century…

Identifying the genetic variations that predispose people to diseases like cancer, diabetes and schizophrenia was a major purpose of the Human Genome Project…

Even incomplete, the databases of DNA sequences are a treasure trove for researchers, providing answers in a few minutes at a computer terminal rather than after months of laborious, expensive laboratory experiments. For pharmaceutical companies, that speeds the development of new drugs with several promising compounds already undergoing human clinical trials.

For university researchers, that opens up areas of inquiry that would previously not have been worth the time and effort.

More than a year later, on December 25, 2001, a Times update read:

With the Human Genome Project — the effort to work out the sequence of the three billion chemical letters that embody human heredity — nearly complete, biologists are facing a daunting transition.

They must move from their traditional pursuit of understanding one gene at a time to the challenge of figuring out how tens of thousands of genes work in concert in the human cell.

Should they succeed, in 20 years it may be possible to compute the behavior of a cell, perhaps of a living organism, and to calculate how changing one unit of DNA may affect human health or performance.

 Now, here’s a little hyperbole, but from a scientist, not a journalist. Granted, the reporter chooses who to quote.

…Dr. Richard Lifton of Yale predicted that in 20 years researchers would be ”able to identify the genes and pathways predisposing to every human disease.” A panel of biologists led by Dr. Michael Snyder, also of Yale, said that in two decades they would like to know the effects on the organism of the smallest possible change in the genetic programming, the switch of a single unit of DNA.

Here’s how USA Today reported on the genome map on June 23, 2000:

Generations of scientists will spend most of the next century interpreting the code’s meaning and learning to play it on computers in increasingly complex ways that they believe will lead to treatments for most, if not all, human diseases.

 The genetic code also will launch a mammoth growth industry and marry the new darlings of Wall Street: computer technology and biotechnology. Scientists from the public and private projects predict that the information contained in the genetic code will allow them for the first time to study the interactions of many different genes involved in
complex diseases such as cancer and heart disease and to develop drugs that target these diseases at their most fundamental root levels.

Were they generating this hype or just reporting it? And, is there any difference? Here’s more from that story:

(Francis) Collins, the U.S. leader of the international Human Genome Project, are expected to announce the completion of their projects at news conferences Monday in Washington….

“Achieving this milestone is an exhilarating moment in history, and a credit to the ingenuity and dedication of some of the brightest scientists of the current generation,” Collins told USA TODAY. “Even more importantly, it brings us a major step closer to understanding and better treating a host of diseases for which genomics offers the best hope of prevention and cure.”…

Some predict the expected health benefits will beginto appear with regularity in about 10 years.

“We will see an increasing proportion of gene-based medicines coming to the market that are targeted to the disease process,” says Paul Herrling, director of global research at Novartis Pharmaceutical Corp. in Basel, Switzerland. “Many traditional therapies address the end stages of disease. These new therapies will address the disease process, so if a person has Alzheimer’s disease or diabetes, we will develop medicines that stop or slow down the disease process.
Having the human sequence is just the beginning.”

 And, do note that Lander was the first author in the  actual paper on the findings, which was, published ten years ago in Nature, concluding:

The scientific work will have profound long-term consequences for medicine, leading to the elucidation of the underlying molecular mechanisms of disease and thereby facilitating the design in many cases of rational diagnostics and therapeutics targeted at those mechanisms.

Finally, Lander made a bold prediction of his own at Tuesday’s panel:

He cited ” an explosion of work that will culminate, I think in the next five years, in a pretty comprehensive list of all the target that lead to different kinds of cancers and give us a kind of roadmap for finding the Achilles heel of cancers for therapeutics and diagnostics.”

 

BHN report: Hackers, health and the Boston Code-a-thon

Sometimes,  hackers have to work on meaningless problems in windowless cubicles. But on Saturday, a group of number crunchers and tech enthusiasts gathered at Microsoft’s sun-soaked Cambridge offices to find new ways to use health data.

Last week’s “code-a-thon” was the latest “Developer Challenge” hosted by a Health 2.0, a group that organizes conferences around the rich possibilities at the intersection of data, technology and health.

Here’s how Health 2.0 puts it on their website:

Healthcare has big challenges. And technology might not solve them all. But we believe in progress one app at a time. Have a technical problem that needs working out? An app you wish existed? Data that’s sitting on the shelves getting dusty that could be made more useful?

In other words, hospitals, insurers and policy makers have been capturing huge amounts of health data and mining it for years. This effort aims to use that information — much of it in public data sets– for more than claims analysis, and utilization review. With the rise of mobile communication, do-it-yourself science and the quantified self, it’s time to let the hackers at it.

So, with the sponsorship of DIY magazine “Make,” the event attracted about a 100 people, including programmers, web designers and wired epidemiologists. Sitting with his laptop open in an airy space overlooking the Zakim Bridge, Jason Morrison said he is a big fan of gatherings like this one. A web developer for a Boston company called thoughtbot,  he finds it satisfying to work on health problems.

“It is a very ripe field for people to come in and use all this data and then turn it into information and knowledge people can use,” Morrison said. Ideally, the event would produce “actionable” tools that people can use to change their behavior or find information on treatments they might be interested in, he said.

At the end of the day, coders were expected to regroup and present their ideas. Click here for a link to Health 2.0 news site to find out who won.

In this video report, Morrison (in the black jacket) and others talk about what brought them to the meeting.  Postdoc Rumi Chunara of the Children’s Hospital Boston made a presentation on using HealthMap for real time epidemic surveillance.  Psych resident Daniel Karlin wants to track prescribing trends and Bio-hacker Mac Cowell, of DYI Bio Boston, talks about inventing a home PCR kit for those interested in DIYgenotyping.

Neuroscience, music and a Boston symphony of health care workers

Nature Network Boston reports on this weekend’s Saturday’s meeting: “Crossing the Corpus Callosum II: Neuroscience, Healing & Music.”

The Longwood Symphony Orchestra is named for the Boston medical mecca that is second home to most of its musicians. Doctors and other health care workers from Longwood Avenue hospitals and clinics are interested in the symphony not just as musicians, but as scientists.So, in addition to offering concerts, the organization sponsors medical meetings. More here.

BHN Reports: Gawande on reform — “All health care is local.”

The notion that “all health care is local” may sound odd coming from someone who has been deeply involved in health reform at the national level.

But Boston surgeon and New Yorker writer Atul Gawande made the case for locally driven reform this morning at a health care quality colloquium at Harvard.  Communities, he said, need to find ways to create working systems out of the complex, fragmented elements of medicine.  

 “Our deepest struggle in medicine in this wake of health reform –we can imagine that it is money or the rules and regulations that exist or yet to come down,” he said. “But if you watch the day to day experience of what it is to take care of people, you realize that the deepest root of our struggle is the complexity of what we are trying to pull off. “

Health care workers are surrounded by tests of their ability to handle the complexity that comes in the form of 13,600 diagnoses, 6,000 drugs and 4,000 procedures.  And, he said, they are trying to do it within a system that was built for a world that had fewer, simpler solutions.

The system evolved in another era when medicine was “small, fragmented and artisanal in nature,” he said. “But the volume and complexity of our discoveries has now reached  a point where it has exceeded our ability as individual artisans to deliver optimal care reliably, safely and without the waste of resources.”

He used the advent of penicillin to make his point. Penicillin seemed like a miracle, he said. It could cure diseases that seemed incurable.

“It was so simple,” he said. “It was just an injection. And it made us imagine that this would be the future of medicine. We were fooled. It made us think that discovery was the hard part and execution would be easy.”

He compared the current execution to a poorly built machine with great parts. The fee for service system has “made us almost giddy in our use of high tech services” at the expense of low profit services like geriatrics, mental health and preventive health.

But, Gawande said that he sees solutions in his reporting on cost and practice pattern variations. The highest costs systems don’t always provide the best care, he said.

“That means there is hope,” he said. “It means that there is something to be learned from what we are doing to make quality and safety better in ways that actually reduce costs.”

 Gwande spoke at the National Quality Colloquium,  which is being sponsored by the Jefferson School of Population Health at  Thomas Jefferson University in Phildelphia.

BHN Report: Massachusetts health costs hearings

The Commonwealth is getting serious about health care costs. Increases are unrelenting and over the top.

In Massachusetts, health costs are rising at three times the rate of wages, according to testimony below. Rising prices are eating away at company profits, family savings, worker’s wages and public health programs.  

Studies, bills, hearings. Will we get action?

See the Globe’s reporting on the ongoing hearings on health costs and the push toward global payments. Instead of paying per procedure, global payments cover costs per patient. The idea is to encourage quality instead of overtreatment.

The testimony continues on Thursday and Friday. The state is streaming the hearings live and posting copies of speaker statements.

BHN caught the end of Monday’s testimony, which came from Harvard Professor Nancy Turnbull and a panel of consumer groups. Below find some unedited audio from the panel, which was called “Consumer Experiences with Health Care Cost Trends.”

Nancy Turnbull, Senior Lecturer on Health Policy and Associate Dean for Educational Programs, Harvard School of Public Health.

“In Massachusetts, health insurance premiums are increasing faster than income, which is creating a crisais of affordaility for individual and families.”

• Audio
• Written testimony

Cheri Andes, Lead Organizer, Greater Boston Interfaith Organization

“GBIO believes that this trend of out-of-control health care costs is a moral issue as well as an economic one.”

•  Audio
• Written testimony

Robert Restuccia, Executive Director, Community Catalyst, Inc.

• Audio
• Written testimony

Matt Selig, Executive Director, Health Law Advocates

“In our work with individual clients we find that consumers still consistently face the burden of out-of-pocket health care costs aside from premiums, deductibles and copayments.”

• Audio
• Written testimony

Deborah Banda, Massachusetts State Director, AARP

Written testimony

Finally, the March Madness review of the Health Wonk Review is up. I live with a couple of Tar Heel fans. So, with the the boys’ team out,  our motto here is — Go Big Red!  The Yankee half of the family has Cornell links.

BHN exclusive: Relman on ACRE conflict of interest meeting

During his 14 years as editor of the New England Journal of Medicine – most of the 80’s and some change – Dr. Arnold S. Relman often commented on the influence of money on medicine. He still doesn’t like it. BHN noticed him at last week’s meeting of Association of Clinical Researchers and Educators (ACRE) “an organization of medical professionals dedicated to the advancement of patient care through productive collaboration with industry and its counterparts.”  (See previous blog post about the meeting.)

So, we asked for his thoughts about the presentations. Here they are:

“I sat through the whole program, which was a sustained diatribe against conflict-of-interest regulations rather than a scholarly, balanced discussion of the issues. There was practically no time for audience questions or comments, but instead an almost unrelenting barrage of ideological and anecdotal criticism of what was said to be a misguided “belief system” that worries excessively over relations between industry and the medical profession. There was an occasional informative and reasonable contribution, but for the most part sarcasm and anger prevailed.

 

The heavily industry-related audience loved the performance, but the obviously biased, self-serving, and often grossly flawed presentations should have embarrassed the organizers. Although neither Harvard Medical School nor the Brigham & Women’s Hospital sponsored or formally endorsed the meeting, the HMS Dean did give the initial welcoming remarks, and the Hospital offerred its facilities for the event. One can only hope that they are now having second thoughts.”

 

here are some other reports on ACRE and the meeting: Policy and Medicine, Postscript and The Carlat Psychiatry Blog. 

BHN Exclusive: Mass gift ban takes a beating from ACRE

Thursday’s inaugural meeting of the Association of Clinical Researchers and Educators drew a full house to the Bornstein Amphitheater at Brigham and Women’s Hospital.  Members of the group believe that disclosure rules and gift bans for doctors – like the one that just went into effect in Massachusetts –  are too strict.  The meeting program describes the issue this way:

Under mounting pressure from interest groups, the media, and select government officials, academic medical centers have begun adopting restrictive conflict of interest policies that often sever productive relationships between industry and physicians involved in clinical research and educational outreach.

(See this Globe story for  background on the topic or click on the “research integrity” category to the left. Critics of industry support for academic researchers say it creates to conflicts of interest. Supporters believe it encourages innovation. )

So, with portraits of notable BWH doctors looking down on them, researchers, lawmakers and industry reps made a lot of jokes about the corrupting influence of pens with drug company logos. A sampling of the speakers found that they ranged from measured and informative to shrill and angry.

This from a session on the Massachusetts gift ban, which prohibits drug and device companies from marketing products by courting doctors with high end meals, Red Sox tickets and four-star travel.  

–State Representative Michael J. Rodrigues, vice chairman of the legislature’s Committee on Public Service, said doctors need to be more involved in fighting the laws like the state’s gift ban law.

“I was very happy with the support I got from industry. But throughout the debate I was wondering – where are the physicians. “

–Sarah Elisabeth Curi, a lawyer with the Mass Medical Society, explained the new law and said the law will focus on industry compliance, not doctors.

 “No physician in Massachusetts is going to be arrested for not complying with the law”

Click here for her powerpoint.

–Dr. Carey D. Kimmelstiel, head of clinical cardiology at the Tufts University School of Medicine talked about the benefits of having clinicians give industry-sponsored talks. Preparing the talk educates the speaker. He or she gets feedback and an audience of busy docs gets a quick update.

 Audio:

  Kimmelstiel argues that the rules have tamed some excesses.

 But, he worries they go too far.

 

– Dr. Henry R. Black  Hypertension Division, New York University Medical Center, President, American Society of Hypertension :On Value of Collaboration to Medical Training Programs & Professional Associations

Audio: Part 1, Part 2

There were also a few supporters of conflict rules and gift bans in the crowd, including former NEJM editor Arnold Relman, who offered post meeting comments. The American Medical Student Association– a group worried about conflicts  of interest for industry-funded professors  – also sent a few people. Nitin Roper, a University of Connecticut medical student, had this to say about the meeting.

   

Roper ACRE

►

Finally, here are some other reports on ACRE and the meeting: Postscript,  The Carlat Psychiatry Blog and Policy and Medicine

 

BHN exclusive: Top ten reasons to oppose health reform

First, some business. Mass had its first swine flu death. And, the feds are expected to define meaningful use for HIT today, which will spell out what kind of computer systems will qualify for stimulus funds.

Top ten reasons to oppose health reform – A work in progress.  Add you own!

You’ll have to wait months for that MRI you don’t need. 

You want to keep getting invited to your doctor friend’s house on Nantucket.

Might not be able to pick the 20 doctors who will pop in occasionally during your labor just in case the baby pops out.

I can pay from my own $150,000 heart surgery, thank you.

Worried that HIT will turn you doctor into the robot in Lost in Space: ” Warning! Patient approaching!”

Hey, I have great health care – signed, Prisoner #8640, San Quentin.

Fuck those Massholes, they’re always trying to show off – signed, A-Rod.  

Outcomes, outcomes. Our waiting rooms are much nicer than those in  other countries where they “live longer.”

The emergency room is a great place to spend the day.

I don’t trust the government to pay for my anyone’s care, except my 65-year-old parents who automatically qualify for Medicare.

Copyright © BHN.

Norsigian of Our Bodies, Ourselves on single payer

First — lots going on in DC this week, including the Obama speech to the AMA, here via MSNBC. Click here for BHN’s favorite links.  Also note today’s WSJ interview with HIT man David Blumenthal.

So, Judy Norsigian of OB/OS and Jennifer Potter of BIDMC and Fenway Health opine in the Globe on why they think single payer approach to health reform will benefit women.  

A single-payer healthcare system would more effectively control costs than any other plan that Congress is considering as it moves toward a reform bill. And by controlling costs, existing resources could be allocated more equitably, especially for the benefit of women.

Update 6/17:  OB/OS  releases an official policy position on single payer 
 
BHN talked to Norsigian about health reform earlier this month. (Here’s a link to a discussion of the Gawande story she refers to.)

  

BHN exclusive: Gay Pride and health, Boston 2009

        The world was an unfriendly place for gay people when the Fenway Community Health Center started in the basement of a Boston church in 1971. They recently cut the ribbon on a 100,000-square-foot building that rivals any of the monuments to medicine on Longwood Avenue.

             BHN visited the Boston Gay Pride festivities on Saturday, June 13 and offers this video update on health and the gay community. (Most people ID themselves. The man in the Hawaiian shirt is Dick Bourbeau from Boston Prime Timers.)