Making informed decisions about genetic tests
In response to the increasing availability of genetic tests the American College of Medical Genetics has issued a policy statement on direct-to-consumer genetic testing. It includes five minimum requirements for any testing protocol:
- A knowledgeable health professional should be involved in the process of ordering and interpreting a genetic test.
- The consumer should be fully informed regarding what the test can and cannot say about his or her health.
- The scientific evidence on which a test is based should be clearly stated.
- The clinical testing laboratory must be accredited by CLIA, the State and/or other applicable accrediting agencies.
- Privacy concerns must be addressed.
Visit http://www.acmg.net for the complete ACMG Policy Statement.
The information was presented and discussed in an article from ScienceDaily, (2008, April 28), How Can Consumers Make Informed Decisions About Genetic Tests?
Experts in the area were quoted as follows:
"Just because a genetic test exists, it does not mean it is right for everyone or even right for anyone", says Michael S. Watson, PhD, FACMG, executive director of the American College of Medical Genetics. "Medical genetic counseling, testing and treatments offer tremendous possibilities for the future of health care and genetic medicine will continue to play an increasing role in the timely prevention, diagnosis and treatment of genetic disorders but as in any new and changing field, there is a lot of misinformation out there and more research to be done. Consumers need to be cautious and always involve their healthcare provider, and in some cases a medical geneticist or genetic counselor, in their decisions about genetic testing."
Joe Leigh Simpson, MD, FACMG, president of the American College of Medical Genetics says, "Decisions based on genetics are very personal and can be difficult, emotional, costly and life-changing; they are not to be undertaken lightly. The causes of many conditions are complex and multifactorial including a combination of genetic, lifestyle and environmental factors. The potential benefits to mankind are tremendous but there are a great many questions still to be answered and more research to be done to better understand how genetics affects many conditions."
"Geneticists and genetic counselors are the 'professional guides to the human genome' and can help patients make informed decisions about choices related to genetic testing and provide invaluable support and guidance in interpreting test results in light of personal and family history. This is not an area where people should really 'go it alone,'" concluded Dr. Watson
These sound to me like excellent standards. I wonder what will be needed to have them implemented?
Marie Godfrey, PhD
Genetic tests for disease
I think you're right, for the most part it's a good way for the company to separate, you from your money - and give them valuable information, without much benefit for you. There's a similar thing with a test for genetic risk of diabetes:
http://dnatestingguides.com/2008/05/dna-testing-and-diabetes/
And I'm sure that there'll be more tests popping up all the time as the genomics industry becomes more profitable.
However you are exactly right - this info needs to be able to generate alternate options for you, which the Alzheimer's test can't do (or Huntington's etc). Even the diabetes DNA test I mentioned can only suggest you live a healthy lifestyle, which is good advice to everyone who hasn't taken a DNA test.
DNA testing and diabetes
Thank you for your comment. I don't normally leave web addresses in comments received by geneforum, but decided to leave yours because it provides a range of information. Please note that geneforum does not endorse any of the providers advertising on the site your provide, nor does it necessarily support the detailed references to specific companies.
Genetic test for Alzheimer's
The issue of Parade magazine I received in my newspaper Sunday included a Feedback blurb: A new DNA test can tell if you carry the genetic risk factor for Alzheimer's disease. The drawback: No treatment exists to prevent or delay progression of the disease. Would you take the Alzheimer's test?
According to their results at publication time, 91% said yes, 4% no, and 5% not sure.
I checked into parade.com and searched for a while before I found the article, the survey, and the results. I voted "no" and then proceeded to check latest results: 89% yes, 4% no, and 7% I'm not sure. There were 4438 votes so far.
As far as I can see, the whole thing is free advertising for the company providing the test. For $399, you can give them some information on your health and genetic background and they will send you results. The website gives you only the following information related to the ACMG's proposed standards for genetic testing:
Thanks, but no thanks.