DNA: the wild west of online tests

Daily Newsletters

Sign up to ZDNet UK's daily newsletter.

Judy Biggert, an Illinois Republican, introduced the Genetic Nondiscrimination Act, or HR 1227, last year. The bill would allow consumers to pursue genetic testing but prohibit insurance companies from denying coverage or charging higher premiums for customers known to be predisposed for a genetic disorder.

It would also prohibit employers from requiring applicants to submit results of genetic testing. The bill now has 182 co-sponsors, but may stall before it becomes law, according to executives from the National Institute of Health. A similar bill, S306, passed the Senate by a vote of 98 to 0.

On 29 April, Dr Francis Collins, director of the National Human Genome Research Institute, wrote in a policy alert that people's fear about genetic discrimination is threatening the progress of medical research, and legislation to govern genetic testing isn't going forward because businesses that are worried about "nuisance lawsuits" are lobbying against it.

In some cases, "genomics" is already ushering in personalised medicine, he said. Oncologists can take cells from the tumour of a woman with breast cancer and use that to determine whether she needs ancillary chemotherapy after it has been removed, Collins said.

All that said, when it comes to fatal diseases, experts say some people would rather stay in the dark. "Many people just don't want to know," said Benkendorf, "so that's why they aren't taking tests."

Talkback

My 18-year-old son David Asbell, was just denied enlistment into the US Air Force. Without even getting a military physical, he was denied twice due to his family medical DNA records that show he has genetic hemochromotosis. After failing the first time we went to Birmingham Alabama and met with a highly regarded specialist in the blood disorder field, Doctor James C. Barton of Southern Hematology & Oncology. Dr. Barton evaluated my son’s condition and composed a letter to the Air Force explaining his condition in detail. He explained that his HFE genotype and iron values represent no excessive risk. He also explained the number of suspected cases that are currently in the military unknowing and having the same condition as my son.
We were fortunate to find that my son is a C282Y homozygote at the early age of 16. He realizes that regular monitoring is a must, and possibly phlebotomy or a new oral drug Exjade may be necessary to live a normal healthy lifestyle. He is currently in good health, and at present his iron levels are so low that he has never had the need of any treatment or a phlebotomy. Because of the early DNA testing that revealed his potential problem, he should never have to give blood more than 3 or 4 times each year at some point in the future, if at all.
I am outraged that medical science says or his DNA says that he has hemochromatosis, when the disease is a result of Iron overload, which he hopefully will never experience due to his advance knowledge of the potential problem. There needs to be another term for the disease or his condition so as to indicate to other unknowing medical or government agencies that it is entirely possible to avoid complications or never actually experience the end result of the disease.
Due to the blessing of our advanced awareness and now the curse of the medical terminology, my son is a far lesser liability to the military than all the unknowing troops that are subject to have problems later in life due to iron overload.
The military medical manuals concerning the disease is outdated, and does not take into consideration at all discovery of the disease in advance through genetic DNA testing. Early discovery (as in our case), of the disease, all but elimminates the risk.

via Facebook 8 July, 2006 11:28
Reply

Post your comment

In order to post a comment you need to be registered and logged in.

You can also log in with Facebook. Log in or create your ZDNet UK account below

  • Login

Will not be displayed with your comment

By signing up for this service, you indicate that you agree to our Terms and Conditions and have read and understood our Privacy Policy. Questions about membership? Find the answers in the Community FAQ

Get ZDNet UK's daily newsletter

Enter your email address to sign up

ZDNet UK Live

craigsc

You guys have no idea what is going on at Autonomy. Autonomy could have been a much more profitable organization. The sales operations at Autonomy...

1 hour ago by craigsc on HP cuts 27,000 staff as Autonomy chief Lynch leaves
Moley

How does this impact on dual or multi booting? Seems to me to more or less prohibit this, from Windows 8 anyway. Will Grub 2 recognise Windows 8,...

1 hour ago by Moley on Windows 8 start-up speed forces USB boot workaround
apexwm

I don't understand why there cannot be a slight pause during the boot process so the user can press a key. Many operating systems do this, even if...

3 hours ago by apexwm on Windows 8 start-up speed forces USB boot workaround
Gavin Goodman

You can now buy the Xi3 modular computer in the UK at http://www.ocdistribution.com . This can be bought with the Tand3m software, pricing and...

3 hours ago by Gavin Goodman on CES 2012: Xi3 microSERV3R
Phil at Cloud4

I agree: Mike Lynch can clearly build a business and manage strategy. I suspect the exit of Mike is more likely the end of a planned handover...

6 hours ago by Phil at Cloud4 on HP cuts 27,000 staff as Autonomy chief Lynch leaves
Phil at Cloud4

This is unbeleivable government wastage with only one winner... Microsoft 1 - Tax payer Nil!

7 hours ago by Phil at Cloud4 on 6 million wasted licences and £1,200 PCs: welcome to government IT
Mispam

So what do you do when you can't boot into windows? Why can't I just hold Shift while I power up instead of having to boot into windows and click a...

7 hours ago by Mispam on Windows 8 start-up speed forces USB boot workaround
apexwm

I've also seen that Mac OS X for Intel machines is supposed to run in VirtualBox, which would also be a nice solution. I've never tried it though.

9 hours ago by apexwm on xTreme Triple Booting: Linux, Mac & Windows
dave heasman

What I wonder is why when companies are caught bang to rights in not providing contracted services, people bend over to smear the customers? Surely...

10 hours ago by dave heasman on Virgin throttles broadband for high-speed customers
pjc158

Strange statement from HP regarding Mike Lynch and not capable of scaling a company. Autonomy was a $7bn purchase which started as a small company...

10 hours ago by pjc158 on HP cuts 27,000 staff as Autonomy chief Lynch leaves
lojolondon

Or - possibly, they will destroy business by ensuring people do not invest where there is no return. Another socialist idea, well beyond it's...

13 hours ago by lojolondon on Open Data Institute will act as biz incubator
J.A. Watson

Good stuff Jake, very interesting. Thanks. jw

13 hours ago by J.A. Watson on xTreme Triple Booting: Linux, Mac & Windows
openhgs

"the cost of a second LCD screen is about the same as one day of an office worker's time, so this should soon be recouped in extra productivity."...

15 hours ago by openhgs on Windows 8 could speed multi-monitor uptake
Thomas Gellhaus

I also installed the KDE version; I also will probably try out razorqt since I really haven't had a chance to before. I'm looking forward to the...

1 day ago by Thomas Gellhaus via Facebook on Mageia 2 Released
francisabigail

Acquiring when reinvention/cannibalization is too challenging for a large organization can be an excellent strategy- still, so many mergers stumble...

1 day ago by francisabigail on Ariba buy parks SAP on Oracle's cloud turf
apexwm

All of the feedback regarding using a touch monitor for a desktop PC is right on. Several months ago, we installed a "demo" multitouch all-in-one...

1 day ago by apexwm on Windows 8 could speed multi-monitor uptake
191706

anyone wanting to triple boot *their* own Mac

1 day ago by 191706 on xTreme Triple Booting: Linux, Mac & Windows
SoapyTablet

Cont.. Biggest Bugbear: Win7's stop-animate-go approach to work, you develop a staggered (not in the above alchohol sense of the word) approach to...

1 day ago by SoapyTablet on Windows 8 could speed multi-monitor uptake
SoapyTablet

Ah the joys of Windows 8 Consumer Preview... If Windows 7 was 'Vista with Lipstick', whats Windows 8? Vista with Lipstick, the morning after?...

1 day ago by SoapyTablet on Windows 8 could speed multi-monitor uptake
daveveej

Though the metro look is quite cool on the windows mobile platform I think that think that microsoft ARE MESSING THINGS UP because what has they...

1 day ago by daveveej on Windows 8 could speed multi-monitor uptake