Paper Ideas: Final Paper for SOC371

From BrothersBrothers


Beginning Thoughts

  1. Brief Ideas:
    • Intro: Focus on moving risk discussion into primary care
      • Genetic counselors could teach PCPs, but I prefer to treat the practice of providers who routinely talk about genetics as an "uninspected and unchallenged monopoly of ideas on 'their' subject". In other words, I set out to discover what goes on when genetics providers talk about genetics, not what they say happens or what should happen (Becker 7).
      • This is an example of the extended case method: I sought discussions about genetics in a range of providers, where approaches might be quite different, and I observed genetic counselors looking for things that they did that didn't fit into their model of themselves.
    • My own training as a primary care pediatrician
      • Not problematizing some categories that I assume that I use as a native, as an insider. That is, I have not investigated whether these concepts and categories are used by my subjects because I assume that we are co-members of a group. For example, I have not problematized the roles with which participants are labeled - genetic counselor, medical geneticist, etc.
    • Extended case method
    • Genetic counselor literature on certain elements of the paper
    • Assuming student role
    • Focus on verbal elements, data collection takes shape primarily of handwriting in as much detail as possible.
    • Distinction between the roles of medical geneticists and genetic counselors as highlighting how primary care role in dealing with risk is different
      • KO's thoughts about PCPs having their own types of skills
    • Last section: from is to ought



  1. Background
    • Genetic counseling and medical genetics both emerged fields oriented toward to help people interpret and make decisions based on genetic test results generated through advances in genetic technologies
    • Although these roles were initially poorly differentiated, as demonstrated by Charles Bosk in All God's Mistakes, over the past 30 years they have come to focus on slightly different types and uses of genetic information.
    • Medical genetics developed as a medical specialty, focusing on diagnosing and treating disease with genetic etiologies. At the risk of oversimplifying, then, medical genetics has come to focus on genetic tests as having diagnostic and prognostic value for the person tested.
    • On the other hand, genetic counseling has tended to focus on risk. When one family member is diagnosed with a genetic condition, genetic counselors serve the function of helping family members identify their own risk, especially reproductive risk. Genetic counseling has tended to focus on genetic tests as having predictive value for family members of the person tested.
    • As has been the history when both of these fields, advances in genetic technologies continue to shape their scope and goals. Recent advances in genetic technologies have made it increasingly possible to interpret genetic results to indicate risk in the person tested.
    • One example is BRCA1 and BRCA2, tests which are now available from a number of sources. These tests can be interpreted to indicate risk in the individual to develop breast cancer in the future.
    • This genetic test result is not interpreted to indicate that the person has a diagnosis, but rather that they are at risk to develop one. Complications have therefore arisen with how a person should best respond to this knowledge. There is no standard of care, and the issues of risk are complex and subject to the perspectives of persons who have the genetic variant.
    • Given this complex interaction of various risks, genetic counselors have been the obvious source of information