1. DEMOCRATS
PUSH GENETIC BILL (Washington DC. June 21/00 ), Democrats urged Republicans
Wednesday to move quickly on legislation to protect workers from genetic
discrimination, saying swift passage will help employees who fear losing
their jobs or health insurance. ``Millions of Americans may be afraid to
have genetic testing done because the results of those tests could put
their health insurance in jeopardy,'' House Democratic Leader Dick Gephardt
said. Added Sen. Christopher Dodd of Connecticut, ``In a sense the genetic
code is the key to who we are. No one ought to have a right to pick that
lock.'' ``Social policy must keep pace with science,'' said Rep. Louise
Slaughter of New York, the measure's House sponsor. The bill Democrats
are pushing would ban discrimination based on genetic information. They
hope to get the 218 signatures necessary to force a vote in the House.
John Feehery, a spokesman for House Speaker Dennis Hastert, R-Ill., questioned
the Democrats' motivation and said Republican leaders plan to push a version
of the bill. ``Trying to make politics out of this seems to be rather curious,''
Feehery said. ``We're going to do something on this issue.'' He did not
elaborate on a GOP version but said Republicans wanted to attach it to
patients' rights legislation. With a complete map of the human genome _
a break through scientists say is nearing completion _ doctors will be
able to predict the medical futures of their patients, such as those more
likely to suffer from cancer, diabetes or heart disease. The human genome
is all of the genes that give instructions for an individual's biological
development and the functioning of the cells. Supporters of the legislation
said some employers and insurers are reluctant to take on the extra financial
burden of people with ailments whose treatments can pile up substantial
medical fees. In February, President Clinton issued an executive order
that barred federal agencies from discriminating against employees on the
basis of genetic tests. ``This is happening today in job sites all around
the country,'' said Sen. Edward Kennedy, D-Mass. and a sponsor of the Senate
bill. ``Individuals are being turned down. They are denied promotions.
It is wrong.'' Terri Seargent of Wilmington, N.C. said she had been employed
since 1996 as an office manager, receiving many promotions and raises during
her tenure. But she was fired in December, not long after beginning treatments
_ estimated to cost $48,000 a year _ forAlpha-1, a genetic lung and liver
disease that killed her brother in 1991. ``When I lost my job, I lost all
my life and disability insurance,'' Seargent said. ``In less than 10 minutes,
we went from a secure middle-class family to financially scraping by.''
2. NATURE:
PHARMACOGENETICS AND THE PRACTICE OF MEDICINE
Roses AD.
Pharmacogenetics and the practice of medicine. Nature 2000 Jun 15;405(6788):857-65
Genetics Directorate,
Glaxo Wellcome plc, Greenford, Middlesex, UK.
"If it were
not for the great variability among individuals medicine might as well
be a science and not an art." The thoughts of Sir William Osler in 1892
reflect the view of medicine over the past 100 years. The role of physicians
in making the necessary judgements about the medicines that they prescribe
is often referred to as an art, reflecting the lack of objective data available
to make decisions that are tailored to individual patients. Just over a
hundred years later we are on the verge of being able to identify inherited
differences between individuals which can predict each patient's response
to a medicine. This ability will have far-reaching benefits in the discovery,
development and delivery of medicines. Sir William Osler, if he were alive
today, would be re-considering his view of medicine as an art not a science.
3. ETHICAL
DILEMMA RACE TO MAP GENES (Guardian 15 Jun 2000)
A wake-up
call to the public and politicians was issued yesterday over the dramatic
implications of the genetics revolution, as campaigners warned of a new
era of inequality, discrimination and corporate control if our new knowledge
of how humans work was not used with more care. With scientists due to
announce in less than a fortnight that they have completed the rough draft
of the 'book of life', the sequence of genes which builds, maintains and
repairs human beings from scratch, there are fears that a rush to exploit
the information could provoke the same kind of public backlash that has
hit genetically modified foods. Launching a new watchdog group, the Campaign
Against Human Genetic Engineering (CAHGE), the independent geneticist David
King said: 'There is a widespread concern that genetics is running far
ahead of society's ability to cope with these issues.' Dr King said CAHGE
was not against genetics research or its possible medical benefits. But
he said it was vital to rally public and political opposition to human
cloning and human germline engineering (altering humans' inheritable characteristics)
before they came within easy reach of science. Society had to be alert
to dangers of employment or financial discrimination against people genetically
predisposed to disease, to pressure on women to have abortions with greater
antenatal genetic screening, and to genetic explanations for social problems.
'There's a large amount of work going on in behavioural genetics and that
is beginning to influence mainstream policy formation.' Richard Nicholson,
the editor of the Bulletin of Medical Ethics, said: 'I regard the mapping
of the human genome as an incredible achievement. But much like climbing
Mount Everest or getting to the North Pole, it will be something of benefit
to a few people and unlikely to benefit the vast majority of mankind. 'Medical
research
has become a very competitive field, where the priority of many of those
involved is no longer to make discoveries for the general good of humanity
or even for the sake of knowledge but career advancement and the needs
of the shareholders of biotech and pharma companies.' Agnes Fletcher of
the Royal Association for Disability and Rehabilitation warned of a subtle
revival of eugenics - effectively a selective human breeding programme
to weed out 'undesirable' traits and promote 'desirable' ones - such as
that pursued by the Nazis. 'The promise is all about gene therapy and cures
for difficult and often painful conditions. In fact, what seems to be is
that the money will come from genetic testing and screening out, antenatally,
a whole range of genetic characteristics.'
4. First
genetic medicines available in five years? BMJ 2000;320:1496 (3 June)
The Nuffield
Trust has called on the government to develop a policy framework to regulate
developments in genetics. In its report Genetics and Health the trust acknowledges
that advances in genetic science will deliver a "revolution" in medicine
and warns that ground work needs to done now to ensure that the potential
benefits of genetic discoveries are delivered and that the public is prepared
for what is to come and protected by agreements on confidentiality.
"In recent
years we have seen unprecedented advances in our understanding of human
genetics and of genetic influences on people's susceptibility to diseases.
This has led us to recognise that the impact of advances in genetics on
health and healthcare will be enormous," said Dr Ron Zimmern, director
of the public health genetics unit in Cambridge and a coauthor of the report.
"We ask that
the UK government should take a lead in developing a policy framework that
would provide a context within which scientific developments in genetics
and their clinical and public health applications might be assessed."
Those consulted
about the report agreed that patents should be available for technologies
that come out of genetic research but that gene sequences should be public
property. However, they disagreed about when the first genetic medicine
techniques would be available: some predicted that they could be having
an impact on the health service within 5-10 years while others felt a time
scale of 25-75 years was more realistic.
The report
has been produced jointly by the Nuffield Trust and the Public Health Genetics
Unit after consultation with experts from molecular biology, genetics,
and health services; pharmaceutical and biotechnology companies; and the
Department of Health. It identified two influences driving the future of
genetics. The first is public opinion, which, according to Dr Zimmern,
could just as easily reject as accept genetic advances, as society has
done with genetically modified foods. The second driver is the ability
to translate the advances into technologies that will help people.
To make sure
that policy makers can keep pace with the changes to come, the report recommends
that the government should address six policy areas, including issues such
as public education, financial implications, commercial considerations,
and service delivery.
Genetics and
Health is available from the Nuffield Trust on 020 7631 8450 for £17.50
and will be released on the web at www.nuffieldtrust.org.uk
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