<<Disclaimer: Verify this information before applying it to your situation.>>

The following issue is not for open discussion on this List but for
information only.

Since celiac disease is considered an "orphan" by so many medical
organization, celiacs often belong to diverse groups in order to obtain
a voice in medical activities.

Since celiacs are genetically predisposed, GIG of NA passed along the
following notice for input to the committee by our members.

--
Michael Jones ([log in to unmask]) Orlando, FL USA



                POLICY ALERT FOR ALL ALLIANCE MEMBERS:

Key Info for Alliance Members in VT, IN, NH, TN, OH, WY, AR, ME, MA, IA,
CT, MD, NM, MN, WA & RI:

We are calling for letters from consumers and professionals to members
of the Senate Committee on Labor and Human Resources affirming support
for a broad definition of genetic information.

Chaired by Sen. Jeffords (R-VT), the entire committee was sequestered
this past weekend to grapple with conflicting definitions of genetic
information.  In a surprise move, this committee decided to craft a
substitute for the Snow/Slaughter nondiscrimination in health insurance
bill and "mark it up" as early as next Wednesday June 24.

We are asking that you act immediately to ensure that the consumer voice
is reflected in these current discussions.

Remember:  The power of genetic nondiscrimination legislation is
dependent on the definition of genetic information in that bill.

Your letters can indicate support for a comprehensive definition of
genetic information -- a definition which provides the broadest
protection by including "genes, gene products or inherited
characteristics that may derive from an individual or a family members
(including information about a request for or the receipt of genetic
services)."  This definition resulted from the work of the National
Action Plan for Breast Cancer and the National Human Genome Research
Institute.

Here are the four most important points:

1) How to define "genetic information"?   Some committee members want it
to be inclusive of all information, including DNA tests, analysis of
gene derivatives (cholesterol/BP tests, etc.) and family history.
Others want it to be genetic tests, or hard data about genetics.  In
this latter definition, family history, etc. would not be relevant and
greatly narrow the window of protection, (ie. a person at risk for a
condition due to family history would not be protected from
discrimination.)

2)  What are the nondisclosure provisions?  Who has access to personal
genetic information and who does not?  Some Senators do not want to
include disclosure provisions in the bill.  Others are working hard to
ensure nondisclosure provisions that protect individual privacy and
restrict unauthorized access but do not hamper research purposes.

3)  What are the consequences?  If the more narrow definition of genetic
information prevails, the insurance companies will be able to use family
history and inherited characteristics  in determining actuarial tables
and premium prices.

4)  Since health insurance and employment are intrinsically linked,
should discussions focus on both genetic nondiscrimination in employment
as well as health insurance coverage?

It is important that members of the Senate Committee know which
definition of genetic information you support and your opinion on each
of the above points.

These Senators serve on the Labor and Human Resources Committee:

Republican:  Jeffords (chair) (VT); Coats (IN); Gregg (NH); Frist (TN);
Dewine (OH); Enzi (WY); Hutchinson (AR); Collins (ME).
Democrat:  Kennedy (MA); Hawkins (IA); Dodd (CT); Mikulski (MD);
Bingaman (NM); Wellstone (MN); Murray (WA); Reed (RI).

HOW CAN YOU HELP?
? Write letters to register your opinion on how genetic information
should be defined.
? Remember that protecting family history information is critical.
? Send personal examples of health insurance and employment
discrimination.
? Relay your concerns about the use and misuse of genetic information
resulting from testing, participation in research studies, genetic
services and family history records.
? SEND A LETTER OF SUPPORT NOW!

You can fax your letter to the Senate Labor and Human Resources
Committee at 202-228-5044.  If your state senator is on the Labor
Committee, designate the fax to the attention of that person.
Otherwise, direct the fax to Senator Jeffords and/or Senator Kennedy.
With this designation, staff at the committee office will ensure that
your fax gets to the correct senator.

REMEMBER:  Your letters can help educate our policy makers about the
complexity of "genetic information", the contrasting impact of the two
definitions on individuals and families, the necessity of privacy and
disclosure protections and the consequences of these decisions on
consumers and their families.

Nisha Isaac, M.S.
Genetics Resource Coordinator
Partnership for Genetics Services Pilot Program
Alliance of Genetic Support Groups
(202)966-5557 ext. 202  Fax No.: 202-966-8553