Tag Archives: Human Genome Project

Genome: Unlocking Life’s Code

Photo credit: Smithsonian

Photo credit: Smithsonian

This month “Genome: Unlocking Life’s Code,” first state-of-the-art exhibition about genome science, opened at the Museum of Natural History in partnership with the National Human Genome Research Institute (NHGRI). The exhibit boasts cutting-edge interactives, 3D models, custom animations and engaging videos of real-life stories. According to Dr. Eric D. Green, director of the National Human Genome Research Institute (NHGRI), one of the 27 institutes and centers that make up the National Institutes of Health (NIH), “This exhibition reflects a remarkably productive collaboration between components of two scientific icons of the U.S. government – the Smithsonian Institution and the National Institutes of Health.”

The Human Genome Project (HGP), which is celebrating its 10th anniversary, has helped researchers gain a better understanding of genes, opening pathways to new innovations for health and technology. Before the project, researchers knew the genetic basis of about 60 rare genetic diseases; when it ended the number had jumped to 2,200. Today, with research energized by the HGP, we know the genomic basis of nearly 5,000 rare disorders, according to the exhibits website. Continue reading →

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A Weekly Advocacy Message from Mary Woolley: What’s wrong with this picture?

Dear Research Advocate:

According to our new national public opinion poll on clinical trials and related topics, most Americans are willing to share their personal health data to advance research, and 72% would be willing to participate in a clinical trial if recommended by their doctor. This complements what we know from other polling, i.e. that Americans want research to proceed at a pace of scientific opportunity. Yet we continue to lose ground in the gridlocked political environment, which, by its inaction, is dashing the hopes of patients and families anxious for new therapies and cures. What’s wrong with this picture?

It isn’t as though research hasn’t yielded both societal and economic benefits! United for Medical Research (UMR) and Battelle Technology Partnership Practice have released a report on the economic and transformative impact of the Human Genome Project, timed as we celebrate the 10th anniversary of its completion. This visionary project has resulted in wildly successful public-private partnerships, more than 4.3 million job-years of supported employment, and nearly $1 trillion in total economic impact since 1988.

The goals of the BRAIN Initiative have been compared to those of the Human Genome Project. Breakthroughs are so desperately needed to overcome Alzheimer’s and a plethora of other serious illnesses. In a recent Bloomberg View article, columnist Al Hunt points out the folly of starving research while we are faced with such major health challenges. Continue reading →

The “arms race” in the war on cancer adds new weapon to the arsenal: personal genome sequencing

Large medical centers across the U.S. are investing in a burgeoning area of healthcare for their cancer patients: “precision medicine.” Substantial investments are being made to not only build new laboratory facilities and purchase research equipment, but also to staff these new facilities. Universities like Weill Cornell Medical College, Harvard Medical School, and Johns Hopkins University are joining clinical centers like Memorial Sloan-Kettering Cancer Center in building an infrastructure for personalized medicine with the hope of playing a bigger role in the development of new drugs. Continue reading →

A Weekly Advocacy Message from Mary Woolley: SOTU and – now what??

Dear Research Advocate,

Setting a breathtaking goal for Congress and the nation, the president called for returning our nation to levels of R&D investment not seen since the height of the space race in his State of the Union address Tuesday evening. He spoke of the potential to defeat Alzheimer’s and to assure an “AIDS-free generation”; and he used the human genome project to illustrate the economic as well as human return on taxpayer investment in research. We were thrilled that the president listed medical research among the nation’s top priorities – along with defense, education and energy – right at the beginning of his speech, when he described the devastating damage that sequestration would do to the things the nation values most. This is, I think, an indication that the hard work of the research advocacy community in driving our research-as-a-priority message is paying off, just as we saw in media coverage of the Save Research advocacy campaign we launched after the election with many of our partners in advocacy. Our voices are being heard! It is time to thank the president, and it’s also time to urge Congress to take action. We must strongly advocate avoiding any proposal that threatens U.S. biomedical innovation, public or private sector-driven. See highlights of the science portions of the president’s speech and our press statement.

Speaking, as the president did, of Alzheimer’s, did you know that the annual cost of Alzheimer’s is $200 billion? By 2050, that number is expected to rocket to $1 trillion! To address the looming threat of across-the-board funding cuts, USAgainstAlzheimers has launched a major advocacy push, sending thousands of letters to Congress, leading a sign-on letter of researchers, and running a full-page ad in Roll Call.

As pointed out by columnist Robert McCartney in The Washington Post, television and radio this morning, biomedical research will be hurt by sequestration as much as defense, right here in the National Capital Area. He quoted NIH Director Dr. Francis Collins extensively and also cited Children’s National Medical Center’s Dr. Eric Hoffman, whose important work on muscular dystrophy has stalled as NIH has held back funding until decisions are made by Congress. Meanwhile, patients are waiting. The idea that Dr. Hoffman’s work – and all of medical research, as well as education, energy and defense and much more – is considered “discretionary” is more than revealing, it is unacceptable to Americans.

Fighting to avoid sequestration, the defense and non-defense communities held a joint event this week to highlight the dangers posed by sequestration, as reported in CQ Roll Call. Leaders from the aerospace industry along with members of the university, health, and science community released new estimates demonstrating that sequestration could rob the American economy of 2 million jobs, causing another recession. Also bringing the message home, Sen. Ben Cardin (D-MD) held a Q&A session with federal workers at the NIH, saying that sequestration would lead to the loss of 100,000 jobs, considering both Bethesda-based NIH employees and businesses that work with them.

Have you brought the message home, so that your representative and senators are hearing it and will act? We can help – contact your representatives and email our science policy director, Max G. Bronstein, to learn about other ways boost your engagement. Only 15 days until the March 1st sequestration deadline.

Sincerely,

Mary Woolley

A Weekly Advocacy Message from Mary Woolley: Turn up the Volume on Sequester

Dear Research Advocate,

As the political conventions get underway, we have further evidence that voters want candidates to make research for health a prominent issue, now and after the election.  Our latest national public opinion poll, conducted a week ago, shows voters want to elect candidates who value and highly prioritize the importance of medical progress. Among the highlights: 90% say it’s important for candidates to address medical research; 59% say elected officials in Washington are not paying enough attention to combating deadly diseases, so much so that 63% say the next president should announce initiatives promoting medical progress in his “first 100 days in office.” And the media is taking notice, with articles covering our new poll in POLITICO Pro, Business Insider, The Hill and Roll Call. Clearly, voters will support candidates who share their commitment to research for health.

In case you missed it, our Your Candidates – Your Health initiative was featured in an advertisement in USA TODAY. If you haven’t already, please reach out to your representatives and feel free to cite the recent ad as another reason for them to participate in the initiative. You can also use our Grassroots Guide to activate your networks via social media or raise awareness with a letter-to-the editor or op-ed.

In past letters, I’ve written extensively about the sequester and its implications for research, yet I am hearing reports that many research stakeholders are just now learning about the seriousness that this threat poses. If we are to effectively fight the sequester, we must ensure that all research stakeholders and the public at large are informed about this issue. The American Chemical Society has produced an excellent video outlining the origins and implications of sequester. We also saw a heartfelt letter to the editor in the Hattiesburg American written from the perspective of a mother, whose son is alive today because of investments in medical research. InsideHealthPolicy.com (subscription only) published a story about how the biomedical research community is uniting to stop the sequester, drawing on one of our statements. In The News & Observer, E. Wayne Holden, CEO of RTI International and Research!America member, writes about the need to reduce the deficit while maintaining our investments in basic and applied research. Nightly Business Report also picked up the story, in a segment emphasizing the impact on NIH and medical research.

As part of our ongoing efforts to convey to Congress the value of investing in research, we’ve just released a new fact sheet – Genomics Research: Transforming Health and Powering the Bioeconomy. This document demonstrates the immense return on investment from the Human Genome Project and features survivor stories that showcase how cutting-edge sequencing technology can save and improve lives. As a member of Research!America, use our fact sheets to convey that research is vital to our quality of life, our economic progress, and our nation’s future. As always, let us know how we can help.

Sincerely,

Mary Woolley