Cameo

In Sickness and in Health by Barry Chess

Part VI—Unsettled Issues


“So, is it possible to test for each of these diseases?” asked Greg.

“Yes, but for the sake of practicality, or expense, as some would say, we only test for those diseases that are reasonably likely based on a patient’s history. We wouldn’t for example test either of you for the presence of the CF allele.”

“Wait a minute,” Olga began, “what about a disease that doesn’t show up until later in life. Greg’s uncle didn’t show any symptoms of myotonic dystrophy until he was something like forty …”

“Forty three,” Greg corrected.

“Yeah, anyway, if a genetic test shows that you are going to get a genetic disease and it becomes part of your medical history, could an insurance company exclude it as a pre-existing condition, even though you don’t have it yet?”

“Well, the law is actually quite unsettled about the issue. Genetic testing has the power to predict the occurrence, or at least the likelihood of occurrence, of many diseases—cancer, Alzheimer’s disease, and diabetes just to name a few. Many people are not comfortable with that information being part of their medical records because they are afraid it could lead to a loss of insurance, losing out on a job, or some other form of discrimination. But,” Dr. Ciletti said with finality, “that is a subject to take up with lawmakers. It is entirely possible that after the conversation we’ve just had that you two know far more about the subject of genetic testing than your congressman or senators. If you’re concerned about the legal ramifications of genetic testing, you should let them know. It was a pleasure meeting both of you.”

“Likewise, Doctor. You really helped to put my mind at ease,” Olga said.

“Yeah, I think we both feel a lot better, thanks,” said Greg.

Questions

  1. What are some of the risks and benefits of genetic testing as it relates to legal (not medical) issues?
  2. Do you think an unintended consequence of genetic testing could be that people would be less liable to seek medical care out of fear that they could later be denied life or health insurance? What laws should be used to govern the use of genetic data of this type?

References

Mayo Foundation: Genetic Testing
http://www.mayoclinic.com/health/genetic-testing/FL00076
Private Medical Information Isn’t So Private
http://www.bankrate.com/brm/news/pf/20050830a1.asp
National Society of Genetic Counselors
http://www.nsgc.org/client_files/news/SACGHS_Oct04.pdf


Originally published at http://www.sciencecases.org/sickness_and_health/sickness_and_health6.asp

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