Genetic tests: Approach with caution

John Morton Terre Haute, Indiana — Wed, 13 Feb 2008 00:24:25 GMT

As someone living with severe lung disease - hereditary COPD (Alpha-1 Antitrypsin Deficiency) - I am acutely aware of value of knowing or not knowing what's in my genes.

One risk you failed to mention was the potential for discrimination in the workplace and insurance due to the fact that you simply got tested for something that may, someday, cause a disease process somewhere down the road. Emphasis on the word 'may'.

There is currently legislation at the national level that would protect people from genetic discrimination. The Genetic Information Nondiscrimination Act [H.R. 493, S.358] has been approved by House and is on hold in the Senate because of the actions of Senator Tom Coburn (R-OK)who claims the bill would place too much strain on businesses. The non-profit organization, The Genetic Alliance (http://www.geneticalliance.org), is working on behalf of those with genetic conditions and trying to help move this stalled legislation on to becoming law.

We will never be able to truly access our genetic legacies or futures until laws are in place to protect those against whom that information could be used.

Genetic tests: Approach with caution

Mark, Michigan — Wed, 13 Feb 2008 00:58:58 GMT

Our health insurance company, which insured our child since 1991, excluded paying more than $25,000 of a large health bill because they would not cover a congenital abnormality if "not born under the policy." This congenital abnormality was discovered at 18 y.o.

Do you really want to find out if you have a congenital problem i.e. cancer, heart disease, etc. and open the doors for insurance companies to deny coverage or refuse to pay for your health care as we have experienced.

Genetic tests: Approach with caution

Ed Brailey, East Lyme, Ct. — Wed, 13 Feb 2008 01:45:21 GMT

I have a genetic lung disease and i regret having my son tested for this disease. Before congress is the GINA bill in which the doctor senator from Oklahoma Mr. Colburn has a hold on. By having my son tested he had to give false information on job applications, and joining the national guard to serve our country in Iraq. With this bill people with genetic disease will not be discriminated against will be able to get health insurance, and not have to marry someone you dont really love to get insurance. Do a segemnt on Senator Colburn who has 81 bills on hold. Show the world what kind of senators we have serving our nation.

Genetic tests: Approach with caution

Paul Appleton, West Hartford CT — Wed, 13 Feb 2008 14:08:58 GMT

If the medical establishment cannot keep this private, critical information private and the legal system does not end insurance company business that discriminates against a (pre existing) genetic diagnosis our public health investment should completely nationalize the enterprise, now.
We did not pay tax money for the human genome project only to give drug companies lucrative target information.
Senator Coburn ought be excoriated if above writer is true. Any woman with a strong enough family history ought be BRAC tested...and myraid should set a national goal of when they will be able to pronounce that such is the case....our tax money has enabled them....

Genetic tests: Approach with caution

Durham, CT — Wed, 13 Feb 2008 16:19:19 GMT

This is my third attempt to write about my experience with Ellen Matloff at the Yale Genetics Cancer Center and I have erased it because posting this on the world wide web frankly scares me. It has been several years since I was counseled but the fear of insurance companies finding out is scary even after all this time. And although the outcome was good, it's not something that one wants to share with alot of people. Shame on the insurance companies for discriminating against people who need to know this vital information that could save their lives and their families' lives. This too is preventative health care. Let's hope that the legislation is passed, and passed soon.

Genetic tests: Approach with caution

Dr. Dan, Kansas City, MO — Thu, 14 Feb 2008 00:10:32 GMT

First off. Health Insurance companies cannot discriminate against you based on your genetic information. It's against the law. HIPAA, state laws, and even the congress is in the process of passing a law that prohibits insurance discrimination. Second, most physicians (myself included), know how to counsel patients as it takes 5-10 minutes and is very straight forward. Let's be real here people. Knowing your genetic information can possibly save your life. You can possibly prevent cancer by knowing this information. I just took out the ovaries from a patient who is BRCA positive and I found an occult cancer. We never find cancer this early unless by accident. I saved this woman's life because she got tested. Negative results on the BRACanalysis means you are at general population risk for Ovarian cancer and your risk for Breast cancer should be based on your family's history, but is nowhere near the 87% chance of breast cancer if you are BRCA positive. It's not hard, people, and if you really want to know the story, ask your doctor. Don't believe a one-sided Public relations story bought and paid for my Yale University.

Genetic tests: Approach with caution

Wayne Perry, East Providence, RI — Thu, 14 Feb 2008 00:14:22 GMT

Tuesday, February 12th 2008, you had a program on DNA
Tests, which spoke of a test available for $120.00 from, I believe Sorensen Medical Salt Lake City, UT.
This test could determine an individuals geneology links. Could you please give me more information about contacting the responsible Lab to secure such a test. Thank you

Genetic tests: Approach with caution

JK Boston, MA — Thu, 14 Feb 2008 01:01:51 GMT

It does not seem very professional of Ellen Matloff to make blanket generalizations about the competency of liscensed Medical Doctors. Her voice is often heard when genetics makes a commercial splash---and that voice is usually reactionary. Can we please have a more balanced overview on the progression of genetic testing in the commercial medical arena? Countless lives have been saved yet we seem to be concentrating on outlier situations. Is this a fair assessment?

Genetic tests: Approach with caution

John Morton, Terre Haute, Indiana — Fri, 15 Feb 2008 01:52:27 GMT

Dear Doctor Dan,
Have you ever heard of Alpha-1 Antitrypsin Deficiency related lung or liver disease? Have you ever taken blood to test for the alpha level in someone who had elevated liver enzymes or early onset COPD? Did you warn them that that test could or would reflect the possibility of a genetic condition that could lead to a disease process or processes? Basing decisions to get tested for potential diseases assuming protections at the federal level that are
'almost' in place is like having unprotected sex with a known HIV positive individual knowing that a cure is 'just around the corner'. You may not get infected and even if you do, there is a cure.
While you may be very careful and very thorough in your own practice, I can assure you that for the vast majority of those of us living and dying in the genetic disease community - there are very real reasons to wait until we are fully protected before we go unzipping our genetic fly without protection at the national level.

Genetic tests: Approach with caution

David Guthrie, Boise Idaho — Mon, 25 Feb 2008 09:17:25 GMT

It seems (at $3,000 per whack)that genetic testing is mainly the gypsy forcaster of the rich.

I at least agree with all of them paying plenty in their attempt to not die..live well..etc.

It is the medical realities of the masses that will determine the rise or fall of every civilization (so far)

Can we masses therefor get this free? They're working on that for us right now..right?....DG