DEAR DR. GOTT: Thank heavens for your website, since I can get a very important question out to you immediately without using snail mail. While watching the news last evening, I heard about a test kit I can purchase over the counter that will indicate a possible genetic predisposition to such medical problems as Parkinson’s disease and heart trouble. I was informed the kit will cost up to $30, and once a saliva specimen is sent in to the laboratory, the testing will begin at an additional expense of up to $437.
I am not sure I can handle knowing if my world will fall apart around me, or if I should just plug along as I am — blissfully ignorant of what might lie ahead. Or perhaps it is worth double the money just to know. What can you tell me about the idea?
DEAR READER: Pathway Genomics in San Diego, Calif., is attempting to market a test kit known as Insight, which will offer genetic health reporting. They have a few online retailers who have been marketing the product on a small-scale basis, but Walgreens and CVS have been targeted for mass distribution to the public. Now take a step back, because the Food and Drug Administration enters the picture. According to a recent Los Angeles Times article, Pathway officials assert that the kit meets federal regulations and doesn’t require FDA approval. The FDA has given Pathway 15 days to respond to its requests for more information justifying that statement. This has caused a Walgreens spokesman to issue a statement postponing offering the product to their customers without clarification from the FDA. Because of the lag time of my column, a decision may have already been made by the time this column goes to print.
The National Society of Genetic Counselors has issued a warning that while selling home kits through drugstores would give more people access to genetic testing, such information without input from a doctor could increase the chances of misunderstanding and misinterpretation. Because there may be a genetic predisposition to a disease and a person may be at increased risk doesn’t make that disorder a certainty. Furthermore, the kit is not forwarded to your local hospital but is mailed to a Pathway Genomics laboratory. Results are provided back via the Internet. I don’t know about you, but I’ve watched too many TV police shows to be willing to share my DNA with a perfect stranger. Given an option, I would prefer the saliva be sent to my local hospital, but that’s apparently where the $437 comes in. Scientists and bioethicists have expressed concern that consumers will misuse or misunderstand the results.
It’s my guess that if you poll two of your closest friends, 20 people at work or 500 in your community, you will get a split decision between people who definitely want to know what might be in store and people who prefer to accept conditions as they occur.
Make an appointment for a complete examination with your primary-care physician. Include blood work, a baseline EKG, chest X-ray and any other testing that might be appropriate based on your family history. If you are without insurance and money is an issue, speak with your physician about affordable selective testing. Then speak with your hospital to set up a payment plan that meets your budget restrictions. Eat well, exercise to the fullest extent of your capabilities, and get adequate sleep.
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