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This is old but is also a different perspective.

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  • susie_que_56
    I found this and really think these drs need to talk more to their patients. This disease is so overwhelming at times how can they not help out the person
    Message 1 of 1 , Apr 3, 2002
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      I found this and really think these drs need to talk more to their
      patients. This disease is so overwhelming at times how can they not
      help out the person testing as they put themselves through enough
      hell wondering. Read this and make your own case...

      First, do no harm ...
      Genetic counseling: To test or not to test?

      It's an ordinary day in your practice -- until a patient blindsides

      "Doctor, I've been reading about these new genetic tests," she
      says. "I'd like to be tested for Huntington's disease. It killed my
      father, and I can't stand not knowing for sure if I have it."


      So now what? What if testing reveals she doesn't carry the gene? Will
      she feel guilty about evading the diagnosis that claimed her father's

      And what if she tests positive? How will she react to the
      pronouncement of that death sentence?

      "This (genetic) information has a tremendous potential to harm as
      well as to help and stands to affect a broad number of family
      members," said John Lammie, M.D., associate professor of family and
      preventive medicine at the University of South Carolina, Columbia.
      Lammie spoke during a presentation at the recent Workshop for
      Directors of Family Practice Residencies in Kansas City, Mo.

      "There's a tremendous amount of uncertainty about what this all means
      and the possible harms involved," he said. "It's up to us to help
      guide our patients through an interpretation of genetic testing."

      To that end, Lammie and other presenters at the June session
      described training programs at their respective institutions aimed at
      educating primary care physicians about the medical, social and
      ethical aspects of genetics. It's all part of Genetics in Primary
      Care: A Faculty Development Initiative. (See "Training The Trainers"
      at the bottom for more on GPC.)


      The training mechanisms they described are diverse -- but applying
      that training during patient encounters has yielded some common
      observations, the presenters agreed.

      "Even well-educated patients are often ill-prepared to deal
      realistically with, or even understand, the results of testing,"
      observed Niharika Khanna, M.D., assistant professor of family
      medicine at the University of Maryland, Baltimore.

      "One thing we found was that people are actually coming in asking for
      tests that can harm them," said FP Janice Daugherty, M.D., of East
      Carolina University, Greenville, N.C. "For example, there's the false
      reassurance that a negative amnio test for cystic fibrosis can bring.
      People have a limited knowledge of what probabilities mean. They
      don't understand that the next pregnancy wipes the slate clean."

      In the end, it's the hands-on approach -- a hallmark of family
      practice -- that stands to benefit patients the most, said Nancy
      Stevens, M.D., M.P.H., associate professor of family medicine at the
      University of Washington, Seattle.

      "There's genetics culture and there's primary care culture, and
      they're different," Stevens said. "Geneticists tend to develop an
      overall, several-tiered pedigree and extend that out. Primary care
      doctors tend to approach this issue in a tightly focused, highly
      patient-oriented manner by asking, 'What specific aspects of a
      genetic approach to this health problem or potential health problem
      are likely to benefit this patient?'"


      Training the trainers

      Genetics in Primary Care: A Faculty Development Initiative sprang
      from a three-year contract to the Society of Teachers of Family
      Medicine from the Maternal and Child Health Bureau and Bureau of
      Health Professions of the Health Resources and Services
      Administration. The National Human Genome Research Institute and
      Agency for Healthcare Research and Quality co-fund the initiative.

      GPC provides genetics training for 20 primary care faculty teams
      nationwide, with an eventual goal of integrating genetics as a major
      component of undergraduate and postgraduate-level medical training.

      Each GPC program is highly individualized, using a diverse mix of
      teaching methods. Examples range from presentations during grand
      rounds to inclusion of clinical geneticists on primary care rounds.

      One tool used at the University of Maryland, Baltimore, to stimulate
      discussion is a series of case-oriented "trigger tapes." The video
      presentations emphasize the impact of genetic issues on multiple
      family members.

      The GPC program at East Carolina University, Greenville, N.C., uses a
      technique called the observed structured teaching exercise. OSTE
      allows faculty members to interact with so-called standardized
      patients using a case-based approach. It's fashioned after the
      observed structured clinical exam model developed in 1974.

      Provision of reliable Internet resources physicians can search for up-
      to-date genetic information is a key component of many of these

      Visit http://bhpr.hrsa.gov/dm/genpc.html for more information on the
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