Genetic Diseases/Bill HR306

[Guest guest]

The following article was from Reuters. It is important that you write to

your congressmen/women again, if you already have, and if you have not already

written to them, to ask them to support H.R. 306 which did not get to the

floor last year because of lack of support. It is back in committee.

http://thomas.loc.gov/cgi-

bin/query/D?c105:1:./temp/~c105OUJXA5:e2211: " >~c105OUJXA5:e2211: at

thomas.loc.gov

FEATURE-Genetics advances could be mixed blessing

By Marie McInerney

ADELAIDE, Australia (Reuters) - It promises to deliver a golden age of health,

but gene technology could prove a bitter pill for some people around the world

to swallow.

Life insurance companies in this brave new world could refuse coverage to

people diagnosed as likely to contract a debilitating disease, even though a

crippling disease like Huntington's, a disorder of the central nervous system,

might not strike a susceptible person for many years, or not at all.

Experts say employers could demand that job applicants undergo gene testing to

try to cut down sick leave and early retirement costs. Ethnic and religious

groups with a propensity to particular gene disorders could feel stigmatized

or become research fodder for medical gains to be enjoyed by others.

And all that is in addition to the obvious questions about abortion and human

embryo research, and before any decisive results from research into genes or

mutations responsible for certain behavioral traits or even intelligence.

``We do not allow discrimination on the basis of color, religion, gender. ....

Why on Earth would you want a society in which you actively discriminated on

the basis of their genes?'' Australian molecular geneticist asked

Reuters.

``TIDE OF FEAR AND DOUBT''

Speakers at a recent international conference in Australia on ethical

implications of genetic research raised concerns that new waves of financial

and social discrimination could target people identified as facing serious

diseases.

Rep. Nita Lowey, a New York Democrat, said many of the benefits offered by

genetic testing could be ``washed away on a tide of fear and doubt'' if people

believed tests could cost them their jobs or insurance cover.

Citing a 1997 survey in which most respondents said they would not take

genetic tests if insurance companies or employers were granted access to

results, Lowey warned of the risks of failure to address genetic

discrimination.

``Instead of the Human Genome Project opening a new era of understanding and

treatment it will create a world in which ignorance is preferable to knowledge

and in which medicine is sacrificed to the job market,'' she told GeneCom 98

delegates.

The genome project, a $1.9 billion global program to map and sequence all

human genes, has been hailed as spurring a new golden age in medicine that

could wipe out major diseases.

Scientists say there are now up to 4,000 generally rare diseases such as

Huntington's, cystic fibrosis and Duchenne muscular dystrophy with so-called

genetic markers that can identify people who are at risk of contracting them.

They are working on tests that will show predisposition to more common

ailments such as some cancers and heart diseases, diabetes, asthma,

Alzheimer's disease and schizophrenia.

said advance knowledge of predisposition to a disease might enable

people to adopt lifestyles that could reduce the risk of, or delay the onset

of, a disorder. But he said finding a gene associated with a disorder was a

long way from fully understanding the underlying pathology and even further

from knowing how to control the disorder.

``So, for a long time, knowledge of a future disorder will be a sentence

without remission,'' he said.

In the meantime, the conference was told, societies need to begin to grapple

with the implications of gene testing amid warnings that a little knowledge

can be a dangerous thing.

COMMERCIAL AND SOCIAL RISKS

Life insurance poses early problems. The question is whether the industry

should get access to gene tests to ensure people predisposed to fatal diseases

do not abuse the system.

``If somebody knows he has a gene that is going to do some damage later in

life, I think the temptation would be very strong to rush out and get an

insurance policy, a large one,'' British scientist Sir Maddox told the

conference.

But there could be a major advantage for insurers: gene tests may not

necessarily cut disease levels but could identify which people will suffer

what.

``It comes down ... to the issue ultimately between the profitability of the

insurance companies on the one hand and the public good of not discriminating

against people on issues over which they have no control themselves,''

said.

Also at risk on other levels, the conference was told, are certain ethnic and

religious groups, among them the Gypsies of Europe, the Amish of Pennsylvania

and the Ashkenazi Jews. Many researchers are concentrating their efforts on

such groups which, because of isolation or other reasons, have a high

propensity for some genetic disorders.

Australian geneticist Luba Kalaydjieva said there was no shortage of research

grants on Gypsies, who are among the most restricted genetic isolates in the

world due to discrimination and their own social mores. ``But getting funding

for actually helping these communities is another matter,'' she said.

U.S academic Nanette Elster said there was concern among Ashkenazi Jews who

had been diagnosed as particularly prone to gene-based breast cancer and Tay-

Sachs, a painful neurodegenerative disease that is fatal for young children.

``There is a real fear with genetics about eugenics and Ashkenazi Jews are

particularly sensitive to that given the experience of the Holocaust,'' she

told Reuters.

``If we get into the whole area of behavioral genetics, what is going to

happen if a particular racial or ethnic group is identified as having a

particular gene predisposing to what we would consider a negative social trait

or negative behavior?''

11:42 12-28-98