In 2011, a National Academy of Sciences report called for the creation of a “knowledge network of disease” to help researchers and doctors share information and patient data more effectively. Such a network would also allow scientists and clinicians to access data on the molecular makeup of diseases, vastly improving diagnosis and treatment. But the concept — known as “precision medicine” — is already raising ethical questions and concerns over patient privacy. We talk to the heads of National Institutes of Health, the Food and Drug Administration and UCSF about precision medicine, the subject of a two-day summit in San Francisco this week.

Francis Collins, director of National Institutes of Health (NIH) and former director of the National Human Genome Research Institute
Margaret Hamburg, commissioner for the Food and Drug Administration
Susan Desmond-Hellmann, chancellor of UCSF and former president of product development at Genentech

  • thucy

    What’s scary is that most of the disease we treat in the US at such great cost (T2 Diabetes, heart disease) is preventable, but that the healthcare-industrial-complex refuses to take a prevention-based approach because it can’t survive at its current godzilla size without lots and lots and lots of sick people.
    In reality, UCSF, this supposedly “elite” institution, is, despite its academic research pretensions, perfectly representative of our for-profit US medical system… which spends more than any other country on healthcare and has literally the worst results.

  • thucy

    The fact that the UCSF Chancellor was formerly head of Product Development Genentech is, as Woody Allen once said, “a travesty of a mockery of a sham of two travesties of a mockery of a sham.”
    If Hippocrates were to come back to earth and see what Desmond-Hellman is doing in the name of medicine, he would never stop throwing up.

  • thucy

    For decades the drug companies have ripped off TAXPAYER-FUNDED university research, and used it to enrich their shareholders.
    With that in mind, how much does anyone want to bet that Mr. Krasny doesn’t question Desmond-Hellman about the problems of inserting a former Genentech Product Dev President as the Chancellor of a public university?

  • jurban

    I’d like to know the opinions of the panelists about the possibility of pharmagenomics and if insurance providers will REQUIRE a genome-wide analysis when approving drugs – especially the risky and expensive ones. While it might greatly improve the possibility of a positive outcome by refining the dosages and avoiding fatal scenarios, it would force people to reveal their genome.

  • thucy

    Forum Staff:
    Did Mr. Krasny really just say “I don’t want to sound skeptical, but…” as preface to an incredibly wimpy question?
    Three points:
    1) Please school Mr. Krasny of the classical definition of skeptical.
    2) Why DOESN’T an interviewer want to employ actual skepticism in an interview? Is he afraid that questioning PhRMA will alienate Krasny’s well-placed friends who arranged for “Michael Krasny Day” in SF?
    3) Has this show formally abandoned journalistic integrity?

    • Kenji Yamada

      I would also welcome a little more skepticism and assumption-questioning from Michael with his more influential and well-connected guests.

  • Greg Jensen

    How prepared are insurance companies to pay for the extra cost associated with the diagnostic tests that will help guide physicians to select more effective treatments?

  • Selostaja

    Imagine if the big money currently extorted from the ill by Big Pharma was to be funneled instead into a public health care organization.

  • johnqeniac

    Why is this ‘summit’ – supposedly to empower citizen involvement in medicine – so exclusive and cloaked in secrecy? Why not webcast it, if you believe in transparency? I can’t even find an agenda on the web. What have they got to hide? The guest said that they were going to brainstorm, but maybe some of the other 7 billion humans have some good ideas and not just a handful of self-proclaimed geniuses?

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