Date: Wed, 30 Oct 1996 21:56
From: George Lussier
Subject: My final thoughts on the Nebraska PDers Registry. Part 2
Second, I'm going to turn my attentions to my own backyard. So far I've
identifed which agency is responsiable for Registries in Mass. but I can't
seem to get the employee that I spoke with to acknowledge that fact!! And
the Govennor aide that I spoke with gave me nothing but outdated
information and has failed to send me some requested materials.
____________________________________________
Does the following article from the 08 October 96 issue of the Boston Globe
help you in your quest?
Without new laws to protect their genetic privacy, thousands of
now-healthy people could be denied insurance coverage or jobs because their
genes predispose them to medical problems, health advocates told a state
legislative committee yesterday.
An explosion of genetic testing is creating the potential for new kinds
of discrimination, necessitating ``guarantees of genetic privacy and
protection against genetic discrimination,'' testified Wendy McGoodwin,
director of the Cambridge-based Council for Responsible Genetics.
She and other witnesses yesterday called on the special committee to
propose legislation that would prohibit genetic discrimination, as 13 other
states, including New Hampshire, already have.
Genetic protection laws should also ensure that individuals give
informed consent before undergoing DNA testing, and that they receive
genetic counseling before and after a test that might reveal a high risk of
a serious future problem.
Other advocates said that people who might have genetic disorders may
decide against testing and treatment because they fear they will lose or be
denied insurance if a problem is found.
Testimony at the State House hearing suggested that insurers will
demand access to applicants' genetic records, and perhaps even require
genetic tests to predict health.
Dr. Laurence G. Cignoli, an insurance company medical director
representing the Life Insurance Association of Massachusetts, said insurers
are not now asking applicants for results of genetic tests and don't expect
to until the tests become more common. But, he said, ``it is becoming
increasingly difficult ... to distinguish genetic conditions from other
medical conditions. Many common diseases, such as various forms of cancer
and heart disease, are now being found to have a clearly identifiable
genetic component.''
Cignoli said insurers must eventually have access to applicants' DNA
records to guard against individuals going out and buying a lot of life
insurance when they learn - but conceal from insurers - that gene test
results make a serious disease likely. ``We need to know the same
information the applicant knows,'' Cignoli said.
But several witnesses agreed with a declaration by Sally Whelan of the
Boston Women's Health Book Collective: ``We believe that the individual
ought to own all of their genetic information and all information that
derives from it.''
Yesterday's hearing was the last of four sponsored by the Special
Committee on Genetic Information Policy, established by the Legislature at a
time when 13 other states have passed laws aimed at preventing genetic
discrimination. Reps. Jay R. Kaufman (D-Lexington) and Harriette L. Chandler
(D-Worcester), cochairs of the committee, said that the panel, which
includes medical, genetics and legal specialists, has been digesting a great
amount of testimony but hasn't yet decided whether it will offer legislation.
The issue of protecting consumers' genetic information is complicated,
physicians from Massachusetts General Hospital pointed out. They warned
against writing overly protective laws that might, ironically, keep patients
from receiving the best medical treatment.
Proposals to keep a person's genetic profile completely separate from
his or her medical record could deprive doctors of information they need in
a hurry, said Katherine B. Sims, director of the MGH developmental
neurogenetics clinic.
Sims cited the case of a young girl who was rushed to the hospital
after she suddenly became ill and fell into a coma. Her brother had died of
an inherited metabolic disease, but that information had been kept out of
the girl's medical record and the girl hadn't been tested for the disease -
which she turned out to have - because her family feared loss of insurance.
The incomplete medical record cost physicians valuable time in
diagnosing the disease. Consequently, said Sims, the girl remains
permanently handicapped. ``Fear must not drive people, or their
legislators, to remove critical genetic information from the medical
record,'' said the physician. Though, she added, it must be shielded from
use for discriminatory purposes.
Meanwhile at the hearing, some witnesses argued for state regulation of
the growing number of commercial companies offering DNA tests, saying that
federal regulations don't ensure their effectiveness.
Some of the newest DNA tests are the most controversial, particularly
tests for two inherited breast cancer genes, because the manufacturers are
targeting large numbers of consumers. Jan Platner, executive director of the
Massachusetts Breast Cancer Coalition, said the information they provide
about risk is ``highly speculative,'' and she complained about the
companies' ``very aggressive marketing'' to create demand. She urged the
committee to consider regulations that would ensure consumers accurate,
unbiased information about the tests.
Comment on genetic information issues can be sent to the special
legislative committee on genetic information policy at the Web page
www.geneletter.org.
-----------------------------------------------------------
TRW Spacecraft Operations East
14320 Sullyfield Circle
Chantilly VA 22021
(703) 802-1863
