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January 21, 2002

1.       Privacy fears raised over genetic data
2.       Scientists' Panel Endorses Cloning to Create Stem Cells; Medicine:
          The influential National Academy of Sciences says producing human clones
           should be illegal.
3.       Cloning Judgment leaves Law in Catastrophic Mess and Parliamentary
          System Under Threat
4.       Top advisors want reproductive cloning ban
5.       Lawmaker proposes test-tube gender bill
6.       Panel: Cloning Humans is Unsafe

Courier Mail January 19, 2002, Saturday SECTION: NEWS; Pg.  13 LENGTH: 484
HEADLINE: Privacy fears raised over genetic data

BYLINE: Malcolm Cole

BODY: CONCERNS about the privacy of genetic data have dominated submissions
to a Law
Reform Commission inquiry into gene ethics and laws. More than one-third of
the submissions have raised fears over the misuse of information, and the
storage of either
genetic data or samples. Australian Law Reform Commission president
Professor David Weisbrott said many organisations and individuals were
worried about DNA information being
sold to private organisations. The use of genetic profiling by insurance
companies to assess life or health insurance risks also was a key issue,
Professor Weisbrott said. The inquiry was partly brought about by an
insurance industry decision to ask customers for existing genetic
information. But the industry has a self-imposed ban on testing life
insurance applications, and the Insurance and Financial Services Association
(IFSA) said there was no need for new
legislation. The Association's deputy-CEO Richard Gilbert said insurers were
seeking a "reasonable level playing field of information between the insured
and the insurance company". "But on the other hand we want that to be in the
context of proper respect for an individual's privacy . .

 .," Mr Gilbert said. "We say if the industry is behaving responsibly, to
implement (a new) law will only lead to added compliance costs without any
benefits to consumers."

 Professor Weisbrott said the commission would release draft findings later
this year, but it was inclined to recommend only minimal changes to
legislation. "We have a
pattern of privacy protection already, and we already have fairly extensive
discrimination laws. So I'm not sure that it would be helpful to have a
separate act that looks privacy and discrimination in relation to genetics,"
he said. He also said the commission was not inclined to call for
legislation in the area of medical research, which was also largely
self-governed. While the research community had supported the discussion of
gene ethics issues, many
people were concerned that over-regulation could stifle medical
advancements. Law and order issues were also prominent among the 100-plus
submissions to the inquiry, with differing opinions about the use of gene
technology in catching criminals. Some people consider it to be an amazing
police tool, others are concerned about the use or destruction of samples .
. . where a person is found not to be involved in a crime. Professor

Weisbrott said there was a need for more genetic counselling services in
Australia, or better training for general practitioners in explaining the
results of genetic tests. "We had a number of people
who said they had had tests which found they had a 20 or 30 or 80 per cent
higher risk of contracting a particular condition," he said. "And it was
only later when they had some genetic counselling they found out that the
risk was still only 20 times almost nothing."



Los Angeles Times January 19, 2002 Saturday  Home Edition

SECTION: Part A; Part 1; Page 19; National Desk LENGTH: 1068 words

HEADLINE: The Nation; ; Scientists' Panel Endorses Cloning to Create Stem
Cells; Medicine: The influential National Academy of Sciences says producing
human clones should be illegal.
BODY: Cloning to reproduce humans is currently unsafe and should be illegal,
but cloning to produce stem cells for medical research has "considerable
potential" and should be
permitted, a National Academy of Sciences panel said Friday.The
recommendation by some of the nation's top scientists could prove
influential as senators, many of whom are
undecided on human cloning, prepare to debate whether to join the House in
banning the technique for any purpose.

 Most lawmakers want to ban cloning as a way to produce children, but a
moral and political debate has flared over its use in the hunt for disease
cures. President Bush continues to favor a blanket ban on human cloning, his
spokesman said Friday. "As the president has stated, 'We should not, as a
society, grow life to destroy it,' " said Bush spokesman Ari Fleischer. He
said the president "looks at these issues from a scientific and moral

 Presidential Council to Consider Report As the academy released its report,
based strictly on scientific considerations, the President's Council on
Bioethics, created last summer to weigh the moral implications of new
biotechnologies, was meeting to consider possible restrictions on embryonic
cloning. Council Chairman Leon R. Kass, a University of Chicago bioethicist,
said he would circulate the academy report to members of his panel and
invite representatives to discuss it with the council.

 Compared to reproductive cloning, Kass said, "therapeutic cloning is a much
more complicated issue" in moral terms, in part because of its potential for
preserving life and
alleviating suffering. The National Academy of Sciences report was embraced
by advocates for sufferers of diseases such as Parkinson's and diabetes,
which many hope will prove susceptible to treatments developed from stem
cells derived from cloned embryos. The broadest patient advocacy group said
the recommendations from the academy "could not
have come at a better time."

 "We feel strongly that the American public would support biomedical
research using [therapeutic cloning] to produce lifesaving embryonic stem
cells if they are given a chance
to fully understand the difference from reproductive cloning," said Michael
Manganiello, president of the Coalition for the Advancement of Medical
Research. Cloning opponents, by contrast, blasted the scientists'
recommendations. "It is deeply disturbing that the National
Academy of Sciences feels they can divide humanity into two different
classes and condemn one class of humans to destruction--creating a human
embryo for the express purpose of destroying it," said Sen. Sam Brownback
(R-Kan.), a leading opponent of cloning research. The issue of human
cloning, which has prompted references in Congress to "Frankenstein"
scenarios, has proved extremely sensitive for lawmakers and scientists
alike. In Friday's report, the academy panel referred to cloning for
research purposes not as "therapeutic cloning" but as "nuclear
transplantation to produce stem cells."

 Douglas Johnson, the legislative director for the National Right to Life
Committee, called the language shift a "smoke screen of euphemisms."

 "The word games are disturbing," Johnson said. "It's clear  that what these
scientists want is to permit these labs to mass-produce human embryos for
the purpose of killing them."
Analysis Could Have 'Tremendous Impact' Proponents of therapeutic cloning
argue that it could be permitted without a "slippery slope" to the creation
of a cloned human baby occurring. Daniel Perry, head of the Alliance for
Aging Research, predicted the academy analysis would "have a tremendous
impact on shaping the terms of debate: whether Americans are prepared to
take the unprecedented step of imposing criminal penalties on researchers
who are trying to find treatments for diseases like cancer and Alzheimer's."

 In cloning, scientists remove the DNA from an egg and replace it with
genetic material from another person- -the procedure referred to as nuclear
transplantation. The result is an embryo with the genetic makeup of only one
parent instead of a combination of two. Some researchers say the ability to
produce genetically identical stem cells--cells in the earliest form of
development that still have the potential to become any part of the
body--has great potential. An organ that could be grown using a individual's
own genetic material would not be rejected as a foreign object, a common
problem in transplant surgeries. Still, scientists caution that research is
far from that stage, and cloning opponents argue that advances can be made
in science using stem cells derived from sources other than cloning. The
National Academy of Sciences report said any ban on reproductive human
cloning should be reviewed
within five years if new science indicates the procedure would be safe and a
national dialogue on the "societal, religious and ethical issues" warrants
reconsideration. One "potential benefit" of reproductive cloning, the report
said, "is that it offers one solution for complete infertility."

 The president's bioethics committee, meeting for the second time Friday,
took up the question of when scientific exploration should be restricted.
Council member Janet
Rowley, whose pioneering research on chromosomes led to advances in leukemia
treatment, said more research is needed before restrictions can be seriously
considered. "We are asked to make judgments without the most basic
information necessary to make an informed judgment," she said. "The question
of how important this may be for medicine is very much unresolved. So it is
extremely important that we not erect barriers to American scientists
exploring it."

 In her own work, she said, it took about 30 years for her discoveries about
chromosomes to be translated into effective treatment. "We cannot be
impatient about this."

 Some members argued, however, that as a practical matter it would be
impossible to prevent embryos created for research from being used to
produce cloned babies. "The path from therapeutic cloning to reproductive
cloning is clear and I think inevitable," said Charles Krauthammer, a
council member and columnist for the Washington Post. And Stanford biologist
William B. Hurlbut said, "There are many good scientific reasons to do stem
cell research. The morality of it is a different question."

Cloning Judgment leaves Law in Catastrophic Mess and Parliamentary System
Under Threat

The Court of Appeals judgment against the ProLife Alliance today leaves the
cloning law in complete disarray, but of even greater immediate concern must
be the frightening position adopted by the Judges, who embraced powers never
before exercised in a non-human rights act case.

Lord Phillips, the Master of the Rolls, explained that the Court would use
the power which had been granted by Parliament only in Human Rights cases,
to rewrite legislation, in this case the Human Fertilisation and Embryology
Act 1990. The most serious constitutional issues arise as a result.

The ProLife Alliance has been advised that they have extremely strong
grounds for appeal and a petition to the House of Lords will be submitted
shortly, said a ProLife Alliance spokesperson. Every right-minded person
in this country who cherishes the constitutional rights inherent in a
democracy, regardless of their position on cloning, should be appalled by
todays decision. On the cloning issue itself, the Government has undertaken
that no licences will be issued until the House of Lords proceedings (and
any subsequent appeals) are concluded so cloning remains on hold.  This at
least gladdens our hearts and may give our scientists time to come to their
senses and acknowledge the growing international negativity regarding
experimental cloning.

To give some idea of the chaos which will result from the revamped Act,
please note:

The Court held that cloned embryos from the two-cell stage are subject to
the Human Fertilisation and Embryology Act 1990, but that 1-celled clones
are not: thus exposing a serious loophole in the recent law which banned the
placing of cloned embryos into women.  The ban will now only apply from the
2-cell stage onwards.  The Court also accepted that neither the 14-day time
limit nor the consent requirements apply to cloned embryos: thus, denying
cloned embryos those safeguards that Parliament considered indispensable to
non-cloned embryos, and for which purpose the Act was intended.

Other related stories:

MRC welcomes overturn of embryo ruling

Government wins human cloning court challenge



Top advisors want reproductive cloning ban


A team of senior US science advisors says cloning human beings for
reproduction is not safe and should be banned.
They say only a small percentage of attempts are successful, many die before
birth, abnormalities are common and there are risks to the mother.
The panel approved of the cloning of embryos for stem cell research because
that could lead to treatments for life-threatening diseases.
The panel of the National Academy of Sciences says the safety of
reproductive cloning should be reassessed every five years.
It concluded: "Human reproductive cloning should not now be practised. It is
dangerous and likely to fail. The panel believes that no responsible
scientists or physicians are likely to undertake to clone a human."
However, it added: "Nevertheless, no voluntary system that is established to
restrict reproductive cloning is likely to be completely effective."
The President's Council on Bioethics is about to begin looking into the
rights and wrongs of stem cell research, as well as euthanasia and assisted
It is made up of ethicists, doctors, lawyers and philosophers who have been
told by Mr Bush they could act as "the conscience of the country".
Story filed: 16:23 Friday 18th January 2002


Lawmaker proposes test-tube gender bill
Columbia Daily Tribune
By TIM HIGGINS Associated Press Writer
Published Thursday, January 17, 2002
JEFFERSON CITY - A Missouri lawmaker wants to prevent parents from playing
God by choosing whether their test-tube baby is a boy or a girl.
The legislation by Rep. Michael Reid is one of the first proposals in the
nation that would ban gender discrimination with in-vitro fertilization.
Scientists have learned how to test an embryo for genetic diseases and
disorders before implantation into the womb. Such a test is usually
requested by would-be parents worried their child will be born with
incurable genetic disorders.
Experts said Friday that the new technology also could determine the embryo
s future sex. Essentially, parents could decide if they want to make a baby
boy or a baby girl.
"The advances in human reproductive technology are coming so fast that we
need to have some limits, some boundaries," said Reid, R-Hazelwood. "This is
only a baby step to look at the whole issue of these technologies being used
to practice some sort of eugenics, the breeding of a better form of human
Reid said his proposal, introduced Tuesday, only addresses embryos created
combining a sperm and an egg outside the body.
"It would not prevent parents from using other technologies to rig the odds
in favor of a boy or girl," Reid said.
The medical community is beginning to worry that embryos will be thrown out
because the parents favor another sex, said Gerard Magill, executive
director of the Center for Health Care Ethics at St. Louis University.
There are reasons to discard embryos, he said. For example, the bill still
would allow doctors to reject an embryo because of a sex-related genetic
"While it can be very honorable when dealing with disease and potential
disease, if that leads to the termination of embryos for the reason like
gender selection, it seems like that would be a very serious crossing of the
Rubicon," Magill said.
While Magill doesnt know of any laboratory where this is happening, he
said, "there is no doubt that this technology is developing."
Under Reids proposal, violation of the law would be a misdemeanor
punishable by a fine up to $1,000 and a year in jail. Repeat violators could
face felony charges punishable by up to five years in prison and a fine. It
is unclear in the legislation whether the punishments would apply to the
parents, the doctor or both.
Reid said the United Kingdom has a similar ban.
But no law like this exists in the United States, said Cheye Calvo of the
National Conference of State Legislatures.
Calvo, an expert on genetic legislation, said a few bills similar to Reids
were introduced in other states, but the issue always has quickly died away.
"I dont think legislators on a large scale have looked at this questions,"
Calvo said. "But I expect to see more of it."
The issue is part of the debate around how much tinkering scientists should
do to a childs genetic makeup before birth, Calvo said.
"The balance that we get in society is one nature provides. Its certainly
possible that this technology could throw off that balance," Calvo said.
Friday January 18 1:07 PM ET

Panel: Cloning Humans is Unsafe

By LAURA MECKLER, Associated Press Writer

WASHINGTON (AP) - Cloning human beings for the purpose of reproduction is
medically unsafe and should be banned but cloning for disease research
should be allowed, a panel of the National Academy of Sciences ( news
ews?p=%22National%0AAcademy%20of%20Sciences%22&c=&n=20&yn=c&c=news&cs=nw>  -
web sites
National%20Academy%20of%20Sciences&cs=nw> ) concluded Friday.
The scientific report comes even as White House bioethics advisers are
weighing the benefits of medical advances against the moral hazards of human
cloning. On Thursday President Bush ( news
ews?p=%22President%20Bush%22&c=&n=20&yn=c&c=news&cs=nw>  - web sites
?p=George+W.+Bush> ) challenged the ethics group to be the ``conscience of
the country.''
The academy's report said: ``Human reproductive cloning should not now be
practiced. It is dangerous and likely to fail.''
Animal cloning has shown that ``only a small percentage of attempts are
successful; that many of the clones die during gestation, even in late
stages; that newborn clones are often abnormal; and that the procedures may
carry serious risks for the mother,'' said the panel on the scientific and
medical aspects of human cloning.
However, the panel of scientists added that the ban should not extend to
cloning of embryos in order to extract stem cells that have the potential to
treat life-threatening diseases. That practice is sometimes called
therapeutic cloning to differentiate it from reproductive cloning.
The science panel urged that the safety of reproductive cloning be
re-evaluated every five years but that the procedure be banned during that
``The panel believes that no responsible scientists or physicians are likely
to undertake to clone a human,'' the report said. ``Nevertheless, no
voluntary system that is established to restrict reproductive cloning is
likely to be completely effective.''
The panel focused only on medical and scientific issues, saying it was
leaving to others any discussion of the ethical, religious or social
questions surrounding cloning.
The National Academy of Sciences is a private organization that advises the
government on scientific and technical issues.
Across town, the President's Council on Bioethics was diving into the
details of human cloning. There is considerable support in Congress to ban
the cloning of a human being for purposes of creating another human, but
lawmakers are divided on cloning cells for research and medical treatment.
Even as his advisers were deliberating, Bush repeated his opposition to all
human cloning Thursday, but said the group can serve an important role in
helping Americans understand the issue.
``I have spoken clearly on cloning. I just don't think it's right,'' Bush
told the council, which met with him at the White House. ``On the other
hand, there is going to be a lot of nuance and subtlety to the issue, I
presume. And I think this is very important for you all to help the nation
understand what this means.''
Bush created the council, a mix of ethicists, doctors, lawyers and
philosophers, after wrestling with whether to allow federal funding for
research that used stem cells derived from embryos. He said he hopes the
group will help as he faces similar balancing acts in the future.
``I really think you can help be the conscience of the country,'' he said.
Bush said it would help people like him understand how to come to grips with
how medicine and science interface with the dignity of life, ``and the
notion that ... there is a creator.''
The 18-member council will examine stem cell research, as well as euthanasia
and assisted reproduction, typically in vitro fertilization.
To date, no one has cloned a human, which would be the genetic equivalent of
a twin brother or sister born later. But scientists have cloned several
animals, and last fall, researchers announced they had created a human
embryo clone to provide stem cells for research.
The House has already passed a ban on human cloning and the Senate may take
up the issue as soon as this spring. Council chairman Leon Kass predicted
the council may have a recommendation by summer.
``We are going to try and do a good job, rather than bend ourselves out of
shape to influence the Senate debate,'' he said.
Many in the Senate favor a ban that excludes research and medical treatments
that do not involve implanting a cloned embryo into a woman's uterus. For
instance, researchers believe they could clone the cells of a patient in
order to create embryonic stem cells that are less likely to be rejected
when used in treating his or her disease.
Opponents argue that this sort of treatment would involve destroying the
newly created embryo, which they say is a human life on its own, and could
lead to more objectionable forms of cloning.
On Friday, the council was debating the merits of each argument.
By contrast, Thursday's discussion was highly theoretical. The council is
dominated by academics, and at times its session resembled a graduate
Several council members pointed with outrage to advertisements in their
college newspapers for egg donors that are specifically looking for women
with certain test scores or physical characteristics.
``I'm just disgusted by this,'' said Robert P. George, a professor of
jurisprudence at Princeton University. ``It strikes me as quite
But others wondered what ethical boundaries it crosses. ``You certainly
wouldn't take eggs from someone with a genetic disease,'' said Kass, an
ethicist at the University of Chicago.

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