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I have an admission. I am not particularly proud of myself, but I got a D- in High School Biology. Normally, I wouldn’t share something this personal in this space, but I do so to illustrate a point. In High School, I couldn’t look at the model of the double helix in class without thinking about the board game Chutes and Ladders. Subsequently, I have made peace with Watson, Crick, and the science gods. I am sharing this with you not because Milton Bradley has suddenly become a Symposium sponsor, but because I believe my experience with the sciences is quite common.

These days, one of the emerging themes at Statehouses around the country deals with interest in genetic counseling. Increasingly, states are licensing genetic counselors. For context, think about Genetic Counseling in light of the mapping of the human genome on one hand, and the passage of the Genetic Information Nondiscrimination Act on the other. In the bounty of every solution, we sow unintended consequences which create new and different future problems.

 A generation ago, it was arguably less important to have someone who could explain in detail all of the nuances associated with genetic mutation, genetic discrimination and genetic material. The immediate health concerns were the same, but never before has one’s genetic predisposition been so intertwined with the abilities to find employment, purchase health and life insurance, and rent a place to live. Now it is not only critical—it’s essential.

 As science and politics collide in legislative chambers, it important to address where the elected officials are headed. As of January 2008, six states including: California, Illinois, Massachusetts, Oklahoma, Tennessee and Utah have laws policing the “Genetic Counseling” profession. Indiana, New Jersey, New Mexico, New York, Washington and Wisconsin all are currently debating bills that would license Genetic Counselors. (Courtesy: National Conference of State Legislators)

 In total, a dozen states are implementing or considering implementing laws to license genetic counselors. States police the professions as a public good. When the nature of the work being done is somehow specific or specialized, government may decide that there is an interest in creating rules to police the conduct of practioners. “Practioners” here literally means anyone who practices a specific skill:  folks ranging from plumbers and pipefitters to brain surgeons. 

 So, what is Genetic Counseling?

Genetic counselors are professionals specially trained in the scientific and psychosocial aspects of genetic testing and can help families and their health care providers throughout the testing process. Patients and medical professionals who lack skills in genetics may have difficulty understanding or correctly interpreting genetic test results. Increasing opinion leaders are recognizing that genetic counselors play a key role in the delivery of this technology to consumers.

Genetic counselors provide a variety of services before, during and after genetic testing.  These services may involve the following:

  • An explanation of the power and limits and risks and benefits of genetic testing;
  • Interpretation of family histories and other medical information;
  • Family health risk assessment for a condition;
  • Outline of the options available to families before and after testing;
  • Explanation of possible medical consequences of genetic test results;
  • Counseling for individuals and families who receive unfavorable tests results to help them cope with genetic diagnoses and risks;
  • Coordinate care; and
  • Identify resources.

Never before have the consequences of fully understanding our genetic makeup been so important. While legislation like GINA is intended to protect people affected with (or with predispositions to) chronic conditions from discriminatory acts, information is power. Perverting that information will have dire results. Some of these are evident, and some have not been imagined. Regardless, Genetic Counseling figures to be especially important in the Bleeding Disorders Community given the inherited nature of various conditions across the community. Better understanding how genetic information can be used will hopefully inspire us each of us, individually, to become better stewards of that very same information.

For More Information:

Genetics Legislation Database (NCSL)  http://www.ncsl.org/IssuesResearch/Health/GeneticsLegislationDatabase/tabid/14408/Default.aspx

Genetic Counselor Licensing Laws (NCSL) http://www.ncsl.org/default.aspx?tabid=14282

Organizations

American Board of Genetic Counseling http://www.abgc.net

National Society of Genetic Counselors http://www.nsgc.org

The Genetic Alliance  http://geneticalliance.org/ws_display.asp?filter=home

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