Genetics and Healthcare
Over at Gene Expression, p-ter is discussing genomics and socialized health care. He muses about the possibility of a “genetic underclass” and offers two alternatives to using genetic information for determining health insurance coverage.
- Ban it and make it illegal
- In the U.S., reform the current healthcare system so that the government takes charge and make genetic information a non-issue in determining treatments.
Personally, I would like the approach to come from the public health prevention side. Instead of focusing on the the possibility of genetically susceptible people to develop disease, why not focus on how genetic information can be utilized to prevent disease. Healthcare would cost far less if resources were concentrated on a smaller group of people determined to be at high risk via their genetic profile and lifestyle. Ignoring the part of the equation before the development of disease would be far more costly.
In an ideal world, instead of fearing the use of genetic information to determine insurance, there would be hope that genetic information would be an important part of making us healthier and in less need of expensive treatments than before. But maybe I’m too optimistic.
via ScienceBlogs Gene Expression
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4 opinions for Genetics and Healthcare
Emily DeVoto
Nov 17, 2006 at 4:22 am
Very interesting issue. Part of what doesn’t sit well with me are issues of incomplete penetrance and/or gene-environment interaction. In other words, how good are our estimates of disease risk associated with a given gene, and, given that uncertainty, is it fair to penalize people on that basis? And are genes factored in differently from non-genetic risk factors? (Of course, I’d prefer to see a health system where there’s no need for actuarial science.)
The same questions came up for me when, maybe 10 years ago, I read about prenuptial genetic testing among ultraorthodox Jews. There are certainly plenty of genes that are quite legitimate to look for, that are a real public health problem in this population, involving devastating diseases. However, the potential to discriminate against potential mates based on a less-than-perfect overall score among, who knows, 100 loci, is problematic. Do these tests come with genetic counseling so that families can really understand the risks implied by the results? My guess is no.
My knowledge is out of date, though; if anyone knows more about this issue I’d be very interested.
Hsien Hsien Lei, PhD
Nov 19, 2006 at 12:13 pm
Emily: The uncertainty of risk prediction is something we struggle with constantly in epidemiology. In many ways, genetic risk factors are no different than lifestyle ones. In fact, risk as conferred by lifestyle can be made clearer with the knowledge of a person’s genetic make-up.
If only health insurance could be made available to everyone at a cost they can afford. Sadly, rationing is part of reality.
Todd Blanchard
Jan 19, 2007 at 9:13 am
This is not a hypothetical for me.
I have HHC - Hereditary Hemochromatosis. It is a metabolic disorder that onsets at about age 40 and results in excess absorbtion of iron. Left undetected and untreated, iron builds up in organs resulting in liver disease, diabetes, heart diesease, and early death.
Treatment is by monthly blood donation. Just like giving blood at the Red Cross. If detected early by genetic test, iron levels can be monitored and controlled through blood removal and there is no adverse health impact. HHC is NOT a blood disease and a HHC person can produce a unit of high quality blood suitable for transfusion every 4 weeks.
However, since being diagnosed a year ago. I am no longer able to obtain health insurance. Others with this disorder are intentionally not testing their children for fear they will be denied coverage as well.
1 in 10 Americans carries the mutation. 1 in 200 has the double mutation and HHC is extremely underdiagnosed, largely because the genetic testing is still new.
So here we have a disease that can be 100% diagnosed through genetic testing, can be completely mitigated through inexpensive treatment - potentially free if the FDA would join the rest of the civilized world and certify HHC blood for donor use, and we are being denied health and life insurance anyhow.
Legislation has been introduced to make this discrimination illegal. Support GINA today.
FWIW, based on my recent experiences, I favor option 1.
Todd Blanchard
Jan 19, 2007 at 9:15 am
The link to information about GINA is http://www.geneticfairness.org/index.html
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