Here where I live, there are several prestigious hospitals with dedicated cancer care centers. At the Johns Hopkins Hospital alone, the Kimmel Cancer Center boasts of the most innovative and advanced therapies in the world. It is complete and self-sufficient such that patients don’t even have to cross the street to get tests or treatments. Everything is inside one building. The Cancer Center also comes with its own family and patient services, including a Cancer Counseling Center, survivors and palliative care programs, and two residences for patients traveling from out-of-town to receive treatment.

This is happening across the other 40 cancer centers that were designed by the National Canter Institute. As one doctor said, “We don’t want to see a patient traveling 200 miles to get here,” hence the comprehensive centers of treatment. This arrangement is perfect for treatment and counseling patients and their families. Unfortunately, it comes with a high price tag.

More at “The high price of saving lives: Cancer centers partly to blame for rising health costs.”

image used with permission by Newscom

It is universally accepted that genetic testing is here to stay and will play a major role in health management.  Common sense dictates that it is good health management to understand what diseases an individual is susceptible to, so that steps can be taken, by that individual, if they so wish, to minimize the chance of developing a particular disease or diseases.  Genetic testing, although in its infancy, will eventually be robust enough to provide those answers.

DNA testing best practice requires test results to be clearly explained to patients by a suitably qualified specialist, more often than not a genetic counselor.  If a patient is at risk of a particular disease then best practice dictates that the individual should be offered a health screening program to detect any abnormalities early…. early detection improves survival.

A recent survey by The National Human Genome Research Institute observed that the number of Americans taking advantage of precautionary DNA testing appears to be going down, and the reason is thought to be fear of genetic discrimination from health insurers and employers.

Some health experts are so concerned that they have called for new legislation to protect US citizens from being discriminated against should their DNA test reveal health risks.

A bill which was passed by the House of Representatives last year and is yet to reach the Senate, the Genetic Information Nondiscrimination Act, would prohibit insurers from denying benefits or raising premiums as a results of genetic information, and it would prohibit employers from collecting or making use of genetic information for hiring, firing or compensation decisions.

Another trend that could be fuelling this concern is the rising use of home test kits for DNA. You send a DNA sample to a private service that sends the results directly to you, without your doctor or anyone else knowing about it.

There are advantages and disadvantages to this. On the one hand, it gives people increasing control over their own medical data, but on the other hand, if people want help, but are frightened of the consequences, it could develop into a public health crisis with people denying themselves prompt care and not revealing conditions until symptoms have progressed.

In a recent article, commenting on these latest findings, The New York Times reports experts saying that the benefits of the increasingly personalized approach to health care are being lost because Americans are too afraid of the potential consequences to take advantage of it. Doctors say people can make better informed decisions about their health if they know what risk factors they may have inherited, for instance breast cancer or colon cancer, but this advantage is lost if they fear the consequences will leave them worse off financially.

Whether discrimination actually occurs or not is not the issue, say some health experts, because the anxiety is what needs to be addressed and the sooner the legislation is put in place to protect citizens the better. Dr Kenneth Offit, chief of the clinical genetics service at the Memorial Sloan-Kettering Cancer Center in New York, said fear of genetic discrimination was the main reason people were cancelling appointments to find out if they had cancer risks:

“It’s a tragedy that people are being scared off by this,”said Offit, “we are dealing with potential lifesaving interventions”.

Elaine Warburton  www.geneticsandhealth.com