Forum Bioethik
Human Genetics Alert

8 July 2003


1. EU to Adopt Stem Cell Research Rules This Week
2. Science Friction: The growing--and dangerous--divide between scientists
and the GOP.
3. The Independent Focus Part One: The science - Babymakers
4. The Independent Focus Part Two: The couple - Kylie wanted a baby. The
clinic wanted eggs. They made a deal. If only life were so simple...
5. The Independent Focus Part Three: The debate - 'The lack of regulation
really shocked me' Shelley Jofre says existing rules deny patients the
protection they deserve

1. EU to Adopt Stem Cell Research Rules This Week

7 July, 2003

BRUSSELS (Reuters) - The European Commission (news - web sites) will adopt
new guidelines this week regulating the use of embryos in EU-funded research
in a move aimed at heading off a ban on the controversial technology, an EU
spokesman said Monday.

Since the start of the year, no European Union funds have been given to
scientists involved in creating embryos to carry out stem cell research.

"The research moratorium finishes at the end of 2003 and we want to have
comprehensive guidelines in place," said European Commission Research
spokesman, Fabio Fabbi.

The EU executive is expected to adopt the proposal on Wednesday but it needs
the approval of member states and the European Parliament to become law.
This is expected for the end of the year, Fabbi said.

Scientists say the research could yield cures for diabetes, Alzheimer's and
Parkinson's disease. But opponents argue that the scientists are "playing
God" and that the new technology will end in designer babies and human

Stem cells are the master cells of the body, able to grow into other types
of cells. One way of obtaining them is by therapeutic cloning -- creating
embryos which can be mined for their stem cells.

"The idea is not to encourage the creation of new embryos but the use of
ones already existing," Fabbi said.

When couples undergo fertility treatment, extra embryos are created to aid
chances of pregnancy. The left-over embryos are either destroyed or frozen.

The EU executive wants to encourage the use of such stored embryos rather
than the creation of new ones.

The current EU research budget is worth 17.5 billion euros but only a few
million euros is spent on stem cell research, Fabbi said.


2. Science Friction: The growing--and dangerous--divide between scientists
and the GOP.

July 2003

By Nicholas Thompson

Not long ago, President Bush asked a federal agency for evidence to support
a course of action that many believe he had already chosen to take on a
matter of grave national importance that had divided the country. When the
government experts didn't provide the information the president was looking
for, the White House sent them back to hunt for more. The agency returned
with additional raw and highly qualified information, which the president
ran with, announcing his historic decision on national television. Yet the
evidence soon turned out to be illusory, and the entire policy was called
into question.

Weapons of mass destruction in Iraq, you say? Actually, the above scenario
describes Bush's decision-making process on the issue of stem cell research.
In August 2001, Bush was trying to resolve an issue he called "one of the
most profound of our time." Biologists had discovered the potential of human
embryonic stem cells--unspecialized cells that researchers can, in theory,
induce to develop into virtually any type of human tissue. Medical
researchers marveled at the possibility of producing treatments for medical
conditions such as Parkinson's, Alzheimer's, and spinal cord injuries;
religious conservatives quivered at the fact that these cells are derived
from human embryos, either created in a laboratory or discarded from
fertility clinics. Weighing those concerns, Bush announced that he would
allow federal funding for research on 60-plus stem cell lines already taken
from embryos, but that he would prohibit federal funding for research on new

Within days, basic inquiries from reporters revealed that there were far
fewer than 60 viable lines. The National Institutes of Health (NIH) has so
far confirmed only 11 available lines. What's more, most of the existing
stem cell lines had been nurtured in a growth fluid containing mouse tumor
cells, making the stem cells prone to carrying infections that could highly
complicate human trials. Research was already underway in the summer of 2001
to find an alternative to the mouse feeder cells--research that has since
proven successful. But because these newer clean lines were developed after
Bush's decision, researchers using them are ineligible for federal funding.

At the time of Bush's announcement, most scientists working in the field
knew that although 60 lines might exist in some form somewhere, the number
of robust and usable lines was much lower. Indeed, the NIH had published a
report in July 2001 that explained the potential problems caused by the
mouse feeder cells and estimated the total number of available lines at 30.
Because that initial figure wasn't enough for the administration, according
to Time magazine, Health and Human Services Secretary Tommy Thompson asked
the NIH to see if more lines "might conceivably exist." When NIH
representatives met with Bush a week before his speech with an estimate of
60 lines scattered around the world in unknown condition, the White House
thought it had what it wanted. In his announcement, Bush proclaimed, without
qualification, that there were "more than 60 genetically diverse stem cell

After his speech, then-White House Counselor Karen Hughes said, "This is an
issue that I think almost everyone who works at the White House, the
president asked them their opinion at some point or another." However, Bush
didn't seek the advice of Rosina Bierbaum, then-director of the White
House's Office of Science and Technology Policy (OSTP). Hughes claimed that
Bush had consulted other top federal scientists, including former NIH
director Harold Varmus. That was partly true, but the conversation with
Varmus, for example, took place during a few informal minutes at a Yale
graduation ceremony. Later press reports made much of Bush's conversations
with bioethicists Leon Kass and Daniel Callahan. Yet neither is a practicing
scientist, and both were widely known to oppose stem-cell research. Evan
Snyder, director of the stem-cell program at the Burnham Institute in La
Jolla, Calif., says, "I don't think science entered into Bush's decision at

The administration's stem-cell stand is just one of many examples, from
climate change to abstinence-only sex-education programs, in which the White
House has made policies that defy widely accepted scientific opinion. Why
this administration feels unbound by the consensus of academic scientists
can be gleaned, in part, from a telling anecdote in Nicholas Lemann's recent
New Yorker profile of Karl Rove. When asked by Lemann to define a Democrat,
Bush's chief political strategist replied, "Somebody with a doctorate."
Lemann noted, "This he said with perhaps the suggestion of a smirk."
Fundamentally, much of today's GOP, like Rove, seems to smirkingly equate
academics, including scientists, with liberals.

In this regard, the White House is not necessarily wrong. Most scientists
today do lean Democratic, just as most of the uniformed military votes
Republican--much to the annoyance of Democrats. And like the latter cultural
divide, the former can cause the country real problems. The mutual
incomprehension and distrust between the Pentagon and the Clinton White
House, especially in its early years, led to such debacles as Somalia and
the clash over allowing gays to serve openly in the military. The Bush
administration's dismissiveness toward scientists could also have serious
consequences, from delaying vital new medical therapies to eroding America's
general lead in science. The Clinton administration quickly felt the sting
of the military's hostility and worked to repair the relationship. It's not
clear, however, that the Bush administration cares to reach out to
scientists--or even knows it has a problem.

Mad Scientists

The GOP has not always been the anti-science party. Republican Abraham
Lincoln created the National Academy of Sciences in 1863. William McKinley,
a president much admired by Karl Rove, won two presidential victories over
the creationist Democrat William Jennings Bryan, and supported the creation
of the Bureau of Standards, forerunner of today's National Institutes of
Science and Technology. Perhaps the most pro-science president of the last
century was Republican Dwight D. Eisenhower, a former West Point mathematics
and engineering student, and later president of Columbia University.
Eisenhower established the post of White House science adviser, allowed top
researchers to wander in and out of the West Wing, and oversaw such critical
scientific advances as the development of the U2 spy plane and federally
funded programs to put more science teachers in public schools. At one
point, he even said that he wanted to foster an attitude in America toward
science that paralleled the country's embrace of competitive sports.
Scientists returned the affection, leaning slightly in favor of the GOP in
the 1960 election.

The split between the GOP and the scientific community began during the
administration of Richard Nixon. In the late 1960s and early 1970s, protests
against the Vietnam War captured the sympathy of the liberal academic
community, including many scientists, whose opposition to the war turned
them against Nixon. The president characteristically lashed back and, in
1973, abolished the entire White House science advisory team by executive
order, fuming that they were all Democrats. Later, he was caught ranting on
one of his tapes about a push, led by his science adviser, to spend more
money on scientific research in the crucial electoral state of California.
Nixon complained, "Their only argument is that we're going to lose the
support of the scientific community. We will never have their support." The
GOP further alienated scientists with its "Southern strategy," an effort to
broaden the party's appeal to white conservative Southerners. Many
scientists were turned off by the increasing evangelical slant of
Republicans and what many saw as coded appeals to white racists.

Scientists also tended to agree with Democrats' increasingly
pro-environmental and consumer-protection stances, movements which both
originated in academia. Gradually, as John Judis and Ruy Teixeira show in
their recent book The Emerging Democratic Majority, professionals, the group
of highly skilled workers that includes scientists, moved from the
Republican camp to the Democratic. Yet that transition took a while, in
large part because most professionals were still fiscally conservative, few
sided with pro-union Democrats, and the Republican Party had not yet been
overtaken by its more socially conservative factions. In the mid 1970s, for
example, Republican President Gerald Ford showed a moderate streak while in
the White House and reinstated the Office of Science and Technology Policy.

Ronald Reagan oversaw a widening gulf between the Republican Party and
academic scientists. During the 1980 campaign, he refused to endorse
evolution, a touchstone issue among scientists, saying, "Well, [evolution]
is a theory--it is a scientific theory only, and it has in recent years been
challenged in the world of science and is not yet believed in the scientific
community to be as infallible as it was once believed." Though he
aggressively funded research for military development, he alienated many in
academia with his rush to build a missile defense system that most
scientists thought unworkable.

George H.W. Bush tried to walk the tightrope. He pushed the Human Genome
Project forward and elevated the position of chief science adviser from a
special assistant to assistant. Yet he served during an acrimonious public
debate about global warming, an issue that drove a wedge between academic
scientists and the interests of the oil and gas industry--an increasingly
powerful ally of the GOP. He generally sided with the oil industry and
dismissed environmentalists' appeals for the most costly reforms. Yet he
also tried to appease moderates by signing the landmark Framework Convention
on Climate Change in Rio de Janeiro and helping pass the Clean Air Act,
which aimed to reduce smog and acid rain. In the end, his compromising did
him little good; environmentalists attacked him, and his rapprochement with
liberal academic elites won him few friends with social conservatives. Bush
faced a surprisingly tough primary challenge from Pat Buchanan in the 1992
election campaign, saw his support among evangelicals in the general
election decline compared with 1988, and lost to the Democratic underdog
Bill Clinton.

Newt Gingrich didn't make the same mistakes. When he became the House
Speaker in 1995, Gingrich worked vigorously to cut budgets in areas with
Democratic constituents--and he knew that by the time he came to office most
scientists were supporting Democrats. The speaker took aim at research
organizations such as the U.S. Geological Survey and National Biological
Survey and dismissed action on global warming. He even abolished the
Congressional Office of Technology Assessment, which served as the main
scientific research arm of Capitol Hill. Gingrich claimed that OTA was too
slow to keep up with congressional debates; agency defenders argued that the
cut was fueled by partisan dislike of an agency perceived as a Democratic
stronghold. Indeed, several years prior, OTA had published a report harshly
critical of the predominantly GOP-backed missile defense project, the
Strategic Defense Initiative.

By the mid 1990s, the GOP had firmly adopted a new paradigm for dismissing
scientists as liberals. Gingrich believed, as Nixon did, that most
scientists weren't going to support him politically. "Scientists tend to
have an agenda, and it tends to be a liberal political agenda," explains
Gingrich's close associate former Rep. Robert Walker (R-Pa.), the former
chairman of the House Science Committee. In 1995, Rep. Dana Rohrabacher
(R-Calif.), then-chairman of the House committee dealing with global
warming, called climate change a "liberal claptrap." In interviews with The
Washington Post in 2001, Texas Republican Tom DeLay dismissed evolution as
unproven, said that we shouldn't need an EPA because "God charges us to be
good stewards of the Earth," and denigrated scientific Nobel Prize winners
as "liberal and extremist."

Ph.D. Phobia

George W. Bush embodies the modern GOP's attitude toward science. He hails
from a segment of the energy industry that, when it comes to global warming,
considers science an obstacle to growth. He is strongly partisan, deeply
religious, and also tied to evangelical supporters. And, like Reagan, he has
refused to endorse the scientific principle of evolution. During the 2000
campaign, a New York Times reporter asked whether he believed in evolution.
Bush equivocated, leading the Times to write that he "believes the jury is
still out."

Bush has also learned from his father's experience that siding with
scientists gains him little politically, and often alienates conservatives.
Bush and Rove have tried to woo portions of other groups that traditionally
trend Democratic--steel tariffs for unions, faith-based grants for
African-American ministers--but scientists are different. They aren't a big
voting bloc. They are generally affluent, but not enough so to be major
donors. They are capable of organizing under the auspices of a university to
lobby for specific grants, but they aren't organized politically in a
general way. In short, scientists aren't likely to cause the GOP problems if
they are completely alienated. Scientists have almost never turned
themselves into anything like a political force. Even Al Gore, the
apotheosis of many scientists' political hopes, received little formal
support from them during the 2000 campaign.

Consequently, the White House seems to have pushed scientific concerns down
toward the bottom of its list of priorities. Bush, for instance, has half as
many Ph.D.s in his cabinet as Clinton had two years into his term. Among the
White House inner circle, Condoleezza Rice's doctorate distinguishes her as
much as her race and more than her sex. Consider also the length of time the
administration left top scientific positions vacant. It took 20 months to
choose an FDA director, 14 months to choose an NIH director, and seven
months to choose a White House science adviser for the Office of Science and
Technology Policy. Once Bush had appointed a head of OSTP, he demoted the
rank of the position, moved the office out of the White House, and cut the
number of associate directors from four to two. An OSTP spokeswoman argues
that the administration's decision to move OSTP was inconsequential and that
reducing the number of associate directors was just a way of "reducing the
stovepipes." But geography and staff equal clout in Washington, and
unarguably signal how much the people in power care about what you do.

Moreover, Bush appointed to one of the two associate director positions
Richard Russell, a Hill aide credentialed with only a bachelor's degree in
biology, and let him interview candidates for the job of director. "It
bothers me deeply [that he was given that spot], because I don't think that
he is entirely qualified," says Allen Bromley, George H. W. Bush's science
adviser, who worked for some of his tenure out of prime real estate in the
West Wing of the White House. "To my astonishment, he ended up interviewing
some of the very senior candidates, and he did not do well. The people he
interviewed were not impressed."

Cynical Trials

When required to seek input from scientists, the administration tends to
actively recruit those few who will bolster the positions it already knows
it wants to support, even if that means defying scientific consensus. As
with Bush's inquiry into stem-cell research, when preparing important policy
decisions, the White House wants scientists to give them validation, not
grief. The administration has stacked hitherto apolitical scientific
advisory committees, and even an ergonomics study section, which is just a
research group and has no policy making role.

Ergonomics became a politicized issue early in Bush's term when he
overturned a Clinton-era rule requiring companies to do more to protect
workers from carpal tunnel syndrome and other similar injuries. Late last
year, the Department of Health and Human Services rejected, without
explanation, three nominees for the Safety and Occupational Health Study
Section who had already been approved by Dana Loomis, the group's chair, but
who also weren't clearly aligned with the administration's position on
ergonomics. Loomis then wrote a letter saying that "The Secretary's office
declined to give reasons for its decision, but they seem ominously clear in
at least one case: one of the rejected nominees is an expert in ergonomics
who has publicly supported a workplace ergonomics standard." Another
nominee, who was accepted, said that she had been called by an HHS official
who wanted to know her views on ergonomics before allowing her on the panel.

The administration has further used these committees as places for religious
conservatives whose political credentials are stronger than their research
ones. For example, on Christmas Eve 2002, Bush appointed David Hager--a
highly controversial doctor who has written that women should use prayer to
reduce the symptoms of PMS--to the FDA's Reproductive Health Drugs Advisory

Bush has also taken to unprecedented levels the political vetting of
nominees for advisory committees. When William Miller, a professor of
psychology at the University of New Mexico, was considered as a candidate
for a panel on the National Institute of Drug Abuse, he was asked his views
on abortion, the death penalty, and whether he had voted for Bush. He said
no to the last question and never received a call back. "Not only does the
Bush administration scorn science; it is subjecting appointments to
scientific advisory committees and even study sections to political tests,"
says Donald Kennedy, editor in chief of Science, the community's flagship

Control Group Politics

Any administration will be tempted to trumpet the conclusions of science
when they justify actions that are advantageous politically, and to ignore
them when they don't. Democrats, for instance, are more than happy to tout
the scientific consensus that human activity contributes to climate change,
but play down evidence that drilling in the Arctic National Wildlife Refuge
(which they oppose) probably will have little impact on the caribou there.
But Democrats will only go so far down the path of ignoring scientific
evidence because they don't want to alienate their scientific supporters.
Increasingly, the Republicans feel little such restraint. Hence the Bush
administration's propensity to tout scientific evidence only when it suits
them politically. For instance, though numerous studies have shown the
educational benefits of after-school programs, the Bush administration cited
just one recent report casting doubt on those benefits to justify cutting
federal after-school funding. Meanwhile, the White House has greatly
increased the federal budget for abstinence-only sex education programs
despite a notable lack of evidence that they work to reduce teen pregnancy.
The administration vigorously applies cost-benefit analysis--some of it
rigorous and reasonable--to reduce federal regulations on industry. But when
the National Academy of Sciences concluded that humans are contributing to a
planetary warming and that we face substantial future risks, the White House
initially misled the public about the report and then dramatically
downplayed it. Even now, curious reporters asking the White House about
climate change are sent to a small, and quickly diminishing, group of
scientists who still doubt the causes of global warming. Many scientists
were shocked that the administration had even ordered the report, a
follow-up to a major report from the 2,500-scientist Intergovernmental Panel
on Climate Change, the world's leading climate research committee. Doing
that was like asking a district court to review a Supreme Court decision.

Experts in Exile

This White House's disinclination to engage the scientific community in
important policy decisions may have serious consequences for the country.
One crucial issue that Congress and the Bush administration will likely have
to confront before Bush leaves office is human cloning. Researchers
distinguish between "reproductive cloning," which most scientists abhor, and
"therapeutic cloning," which may someday allow researchers to use stem cells
from a patient's cloned embryo to grow replacement bone marrow, liver cells,
or other organs, and which most scientists favor. When the President's
Council on Bioethics voted on recommendations for the president, every
single practicing scientist voted for moving therapeutic cloning forward.
Bush, however, decided differently, supporting instead a bill sponsored by
Sen. Sam Brownback (R-Kan.) to ban all forms of embryonic cloning.

John Marburger, the president's current scientific adviser--a longtime
Democrat who says that he has good relations with Bush and is proud of the
administration's science record--wrote in an email statement which barely
conceals his own opinion: "As for my views on cloning, let me put it this
way. The president's position--which is to ban all cloning--was made for a
number of ethical reasons, and I do know that he had the best, most
up-to-date science before him when he made that decision." Jack Gibbons, a
former head of the Congressional Office of Technology Assessment, calls
Bush's proposed ban "an attempt to throttle science, not to govern
technology." Harold Varmus, the former NIH director, believes that "this is
the first time that the [federal] government has ever tried to criminalize

Another potentially costly decision is the Bush administration's
post-September 11 restrictions on the ability of foreign scientists to
immigrate to the United States--restrictions which many scientists argue go
far beyond reasonable precautions to keep out terrorists. In December 2002,
the National Academy of Science, the National Academy of Engineering, and
the Institute of Medicine issued a statement complaining that "recent
efforts by our government to constrain the flow of international visitors in
the name of national security are having serious unintended consequences for
American science, engineering and medicine." Indeed, MIT recently abandoned
a major artificial-intelligence research project because the school couldn't
find enough graduate students who weren't foreigners and who could thus
clear new security regulations.

Unscientific Method

Like Gingrich, Bush favors investments in scientific research for the
military, health care, and other areas that garner strong public and
industry support. Indeed, the White House quickly points to such funding
increases whenever its attitude toward science is questioned. But for an
administration that has boosted spending in a great number of areas, more
money for science is less telling than how the Bush administration acts when
specific items on its agenda collide with scientific evidence or research
needs. In almost all of those cases, the scientists get tuned out.

Ignoring expert opinion on matters of science may never cause the
administration the kind of political grief it is now suffering over its WMD
Iraq policy. But neither is it some benign bit of anti-elitist bias.
American government has a history of investing in the capabilities and
trusting the judgments of its scientific community--a legacy that has
brought us sustained economic progress and unquestioned scientific
leadership within the global intellectual community. For the short-term
political profits that come with looking like an elite-dismissing friend of
the everyman, the Bush administration has put that proud, dynamic history at
real risk.

Nicholas Thompson is a Washington Monthly contributing editor.


3. Focus Part One: The science - Babymakers
from The Independent

6 July 2003

The first test-tube baby was born 25 years ago this month. Since then
thousands have become parents due to the miracle of assisted reproduction.
But as scientists turn their dreams into our reality, we are becoming more
and more uneasy about a future of designer babies and pregnant men. In the
first of three special reports on the possibilities, pitfalls and dilemmas
of the mother and father of all scientific debates, Steve Connor examines
the future of babykind

Making babies was once such a simple affair. A candle-lit dinner, the scent
of someone you love, and the rest could be left to nature. The problem for
an increasing number of couples, however, is that nature can no longer be
trusted to complete the cycle of life. More people than ever are turning to
science to cure their childlessness. The trend for career women to start
their families later in life and the problems of falling sperm counts in men
have exacerbated the incidence of sub-fertility in Western societies.

For many couples, fertility treatment has become the last hope of realising
their cherished dream of starting a family. Since the first test-tube baby
was born 25 years ago, thousands of couples have become parents thanks to
the technology of assisted reproduction - yet the science behind in vitro
fertilisation (IVF) has generated disturbing questions about ethics and
morality. Last week we became aware of just how bizarre this world of
reproductive medicine can appear from outside the fertility clinics and
research institutes. "Horror as docs take eggs from dead tots" ran one
tabloid headline about a study to mature the eggs of 25-week-old aborted
foetuses. "Now they want the eggs from aborted babies" was how another
newspaper interpreted the research released at the European Society of Human
Reproduction and Embryology in Madrid.

If ever there was a field of scientific endeavour so fraught with Promethean
possibilities it is human reproduction and embryology. This is where the
stuff of life itself is conceived, where the first sparks of human
development are nurtured and the point where our precious genetic
inheritance is passed from parents to children. The proto-scientist Victor
Frankenstein was trying to breathe the same life force into his cadaverous

Walking around the conference centre outside Madrid, there were no obvious
Frankensteins among the delegates. Young researchers in T-shirts mingled
with portly middle-aged men in Armani suits - the denizens of the private
fertility clinics where the wealthy and the desperate are charged up to
#10,000 for a single cycle of IVF treatment. This was the annual rendezvous
for veiled female researchers from the Muslim world, for scientists and
doctors from China and Africa, and the reproductive specialists from the
wealthiest universities and research centres in Europe and the US.

One such scientist was an Israeli from the Meir Hospital-Sapir Medical
Centre in Kfar Saba. Before a packed auditorium, Tal Biron-Shental, a
trained gynaecologist, gave a bland presentation about her attempts at
maturing ovarian follicles - the fluid-filled sacs where eggs develop -
taken from seven aborted foetuses aged between 22 and 33 weeks. As she
explained in her matter-of-fact manner: "The shortage of donated oocytes
[eggs] has prompted suggestions of the putative use of oocytes from aborted

The study involved bathing foetal ovarian tissue in hormones to mature the
unripe follicles to a stage never previously reached in earlier experiments.
The ultimate goal, Dr Biron-Shental said, was to mimic the natural maturity
of eggs in the ovaries of an adult woman so that foetal eggs could be
"farmed" in a test tube and supplied to infertile women lacking functional
ovaries of their own.

"The local ethical committee of our medical centre approved the study and
informed consent was obtained from the mothers," Dr Biron-Shental said.
However, on closer questioning she had to admit that "there are a lot of
ethical questions [and] we don't have all the answers for those ethical

Supplying fully developed eggs from foetal ovaries raises the prospect of
creating children whose biological mothers were never born. But, however
strange the concept of "unborn mothers" is to the wider public, there are
scientific reasons to pursue the idea, at least theoretically.

A principal cause of infertility is the inability of women to produce their
own eggs. Every girl is born with her full complement of eggs and there is
no natural way of regenerating those that are lost during her lifetime,
unlike the sperm-making factories within testicles. This is why much
research has centred on ways of preserving ovarian tissue outside the body
in the hope that follicles could be stimulated in the test tube to produce
viable eggs for IVF. Some doctors, such as Roger Gosden of the Jones
Institute in Norfolk, Virginia, have experimented with the idea of removing
ovarian tissue and replacing it after, say, a woman has undergone cancer
treatment that would have otherwise have left her sterile.

It is a noble and justifiable idea and one that circumvents the ethical
issues centred on using foetal material. Yet banking ovarian tissue for
transplant later in life raises its own intriguing possibilities. Few would
argue about the ethics of ovarian transplants for cancer patients, but what
about young women who want to bank their ovaries until after they have
established their careers? Some women might merely want to carry out the
procedure to delay the menopause and prolong youthfulness, and why not?

Yet another idea is to create mature human eggs from other cells, such as
skin tissue. This is called "haploidisation" and involves tinkering with the
way a normal or "somatic" cell divides so that instead of retaining the full
complement of 46 chromosomes (the diploid number), precisely half (the
haploid number) are lost in the same way that they are ejected when
"gametes", the eggs and sperm, are created within the ovaries and testes.

If scientists can create viable human eggs from skin cells then it would
enable women lacking functional ovaries to have genetic babies. But it
raises the prospect of generating eggs from the skin of men, allowing, for
instance, a homosexual couple to be father and mother to their own genetic

Even male pregnancies are not such a far-fetched idea in the world of
fertility research. Professor Mats Brannstrom, of Sahlgrenska University in
Gothenburg, Sweden, has shown in experiments on mice that womb transplants
are feasible. Mice who have been given wombs from other mice have given
birth to healthy offspring, and Professor Brannstrom sees no reason why it
should not be possible to carry out a similar procedure on women with no
womb of their own.

He envisages womb transplants between relatives and friends, such as an
older sister who has completed her family to a younger sister who cannot
even start. It might even be possible to transplant a womb from a mother to
a daughter so that the younger woman could bear a child in the same uterus
in which she herself had developed.

"We know that a uterus from a 60-year-old woman can be as good as a womb
from a younger woman," said Professor Brannstrom, who said there is nothing
in theory to prevent a womb being transplanted into the abdominal cavity of
a man. "Although I wouldn't do it," he added.

Fertility problems in men tend to be concentrated on abnormal sperm that
cannot swim properly, or low sperm counts. The development of ICSI -
intracytoplasmic sperm injection - has overcome many of the difficulties by
taking individual sperm cells and inserting them directly into the human egg
to by-pass the first stages of fertilisation. Normally, sperm and eggs fuse
in a more controlled manner and the events that follow the point when a
sperm powers its way through the thick, gelatinous coating of an
unfertilised human egg is one of the most wondrous acts in biology.

Having penetrated the egg's outer shield, the head of the sperm fires out
protein strands that act like harpoons, some of which anchor themselves to
the egg's nucleus, dragging it towards the waiting head of the sperm, which
is packed with the man's genetic information. A courtship of the chromosomes
takes place during fertilisation, with the 23 pairs - one set from each
parent - aligning in formation to produce the required 46 chromosomes of the
fully fertilised egg. Shortly after this point is reached, the fertilised
egg begins its cycle of cell division. It divides into two cells, then four,
then eight and so on until a ball containing hundreds of cells appears less
than a week after conception.

Precisely how a single, fertilised egg can become the trillions of
specialised cells of a new-born baby is largely a mystery. What is known,
however, is that up to a certain stage of embryological development, perhaps
two, three or four days following fertilisation, each cell of the dividing
embryo retains this ability to make a complete human being.

Taking one cell from a three-day-old embryo does not seem to affect its
develop- ment - which is why scientists can test individual cells for
genetic disorders as part of a pre-natal genetic diagnosis. It allows them
to select embryos that do not carry harmful genetic traits. For others,
however, the technique is just another step towards the creation of
"designer babies".

Once again, a development in assisted reproduction can bring important
advances in medicine. But like so many other developments in IVF, they can
be used in more than one situation and what might be an acceptable use for
some people, can be quite unacceptable for others. Making babies has never
been so difficult.

Severino Antinori
Five years ago, the Italian fertility specialist announced plans to use
cloning technology to help infertile couples. In 2001, the Italian medical
authorities warned that he risked losing his right to practise in Italy
because of his plans to clone humans.

Professor Ian Craft
Head of the London Fertility Clinic. In 1976, he became professor of
obstetrics and gynaecology at the Royal Free Hospital School of Medicine.
His team pioneered work resulting in the birth of Europe's first IVF twins
on 29 April 1982.

Robert Winston
Professor of fertility studies at Imperial College School of Medicine. Lord
Winston was part of the team that produced the first test-tube baby in 1978
and he founded the first NHS IVF programme. His techniques have been adopted

Muhammed Taranissi
Director of the Assisted Reproduction and Gynaecology Centre in London,
which has a licence to store women's eggs. He argues that the process could
help women undergoing cancer treatment and career women to have children in
later life.


4. Focus Part Two: The couple - Kylie wanted a baby. The clinic wanted eggs.
They made a deal. If only life were so simple...

6 July 2003

By Marina Cantacuzino

Kylie and Aaron Sidney vow never to go down the baby- technology road again.
Not only have they failed to have a child but Kylie has also endured two
miscarriages, over-stimulated ovaries, a suspected pulmonary embolism and a
severe allergic reaction to the drugs. "I walked into the fertility clinic a
fit, fertile woman, full of hope; three years later, aged 25, I've come out
an infertile woman with nothing but regret and bad memories," she says.

Aaron and Kylie couldn't have children because he had had a vasectomy in his
first marriage. They met in 1997; she already had two children and he had
three, but they were desperate to have a baby together. Despite the severe
emotional pressure of fertility treatment, theirs is a strong marriage. From
the age of 17 she wanted nothing more than to have children; he, 11 years
her senior, is a protective man who has embraced her two children as if they
were his.

Because they couldn't afford Aaron's vasectomy reversal, Kylie came up with
the controversial solution of trading her eggs in part-exchange for the
operation. But having contacted a number of clinics, she was turned down on
medical grounds, on account of having had two miscarriages.

Only one clinic responded positively - the London Fertility Centre, run by
the pioneering infertility expert Professor Ian Craft, who invited the
Sidneys to his Harley Street office. Professor Craft uses a similar system
as egg-sharing, called egg-giving. But rather than two women sharing one
harvest of eggs, the woman providing eggs gives one month's harvest away and
then uses a second harvest for her treatment. In this way, there are more
eggs and more chances of getting pregnant.

Professor Craft says that there is a small risk involved, but one that is no
different from the risks of fertility treatment.

"A scan showed I had mild PCO [polycystic ovarian syndrome]," says Kylie,
"but they said it wouldn't affect the treatment." The treatment made her
feel odd even before the egg collection.

"My whole body was bloated. My face was a big, fat moon. I even had to go to
the jeweller's to have my wedding ring cut off," she says.

Then came the operation to collect eggs. "Coming to, it felt like a huge
piece of concrete had been dropped on my chest. I was vomiting and
screaming. They said that I was hyperstimulating."

At home in King's Lynn, Kylie was unable to get out of bed and Aaron called
an ambulance. In hospital, she was given oxygen and put on a drip. Her
condition had been exacerbated, it transpired, by Voltrol - a painkiller
which had caused an allergic reaction.

Despite her poor health, Kylie was determined to go ahead with the second
egg harvest three months later. "My mother was dead against it," she says,
"but I wanted a child and I was going to get one."

This time, when she woke from the egg-collection operation, the pain was
crushing, she could barely breathe and she had to be dressed by two nurses
and helped to a taxiby Aaron (himself recovering from the operation to
collect sperm). Before she went she was given a paracetomol-based drug,
despite claiming to have warned the clinic she was allergic to it. "At
King's Cross the guards wouldn't let me on the train at first - they thought
I was drunk because I was vomiting, crying and could barely walk."

The next day Kylie collapsed on the sitting-room floor. "She went blue and
her eyes were bulging. I tried to resuscitate her but was sure she was a
goner," says Aaron.

The cause of her problems again seemed to be hyperstimulation. In tonight's
Panorama on BBC1, Professor Craft stresses that hyperstimulation is a
routine part of all fertility treatment, and that patients sign a consent
form that tells them this.

Kylie and Aaron decided yet again to try for a baby and went ahead with
another embryo transfer. Following the operation, she was assured by the
clinic that it had been an easy transfer. A home pregnancy kit test was
positive but after days of uncertainty she was informed she was having a

She sank into a depression, unable to look after the children or carry on
working as an agency nurse. "Aaron tried to be sympathetic but I didn't want
his sympathy. I wanted his congratulations."

In February 2002, there was another embryo transfer. The Sidneys' hopes were
once again raised only to be dashed - two weeks later Kylie miscarried.
Following a small service with the chaplain of the King's Lynn hospital for
all her failed embryos, she returned home and collapsed, determined never
again to go through the ordeal of fertility treatment.

The couple were offered another free-of-charge embryo transfer, but it had
to be stopped early because the combination pill Kylie was given resulted in
deep vein thrombosis.

Despite all this, the Sidneys haven't given up. While never stopping
grieving for their "tiny unfinished babies" they still hope to have a baby
some day. Three weeks ago Aaron's company loaned him the money for a
vasectomy reversal and Kylie is hoping that one day through surrogacy, using
Aaron's sperm, she will get the baby she longs for.

Now, snuggling up to her husband, Kylie says, "Financially I have sort of
wrecked the family because it meant that I couldn't hold down a job."

Even though at times her obsession with having a third child nearly wrecked
their marriage, Aaron has stood by her, accompanying her to every
appointment and claiming to want a baby as much as she does. "But it was a
nightmare," he admits. "Kylie was totally preoccupied."


5. Focus Part Three: The debate - 'The lack of regulation really shocked me'
Shelley Jofre says existing rules deny patients the protection they deserve

6 July 2003

Dipping into the world of fertility treatment for Panorama over the past few
months has been something of an eye-opener. I had always assumed it was a
world that was very tightly regulated.

But our investigation found that the Human Fertilisation and Embryology
Authority (HFEA) is struggling to keep up with what is happening inside
Britain's fertility clinics.

In Hampshire, embryologist Paul Fielding was jailed earlier this year for
deceiving dozens of his patients. He had told them he was freezing their
embryos, when he was not. Some even had what they thought were thawed
embryos placed back inside them. In fact, it was salt water.

But when the case hit the headlines, the public did not hear about the gross
failure of the HFEA to stop Fielding's deception at a much earlier stage. We
have discovered that the regulator knew he had no success with frozen embryo
transfers for three years, yet did nothing.

And, incredibly, on one HFEA inspection, the team did not even bother to
visit one of the clinics where Fielding worked before signing it off.

We have also discovered that some senior fertility experts believe the HFEA
is not doing enough to protect patients. There are 24,000 women a year going
through fertility treatment, most in the private sector. One in four
attempts fails, so it's hardly surprising that some women will take
desperate measures to try to get pregnant.

Many women, who need treatment but can't afford the #2,000-#3,000 that each
attempt costs, are attracted to egg-sharing schemes that are being run in
clinics around the country. If they have healthy eggs they can share some
with another woman who needs eggs for her treatment. That woman then pays
for some of the donor's treatment.

It sounds like a win-win situation. But donating eggs is a risky and often
painful procedure. And what happens if the recipient gets pregnant and the
donor does not? Or vice-versa? The HFEA has outlawed the sale of donor eggs,
so why does it allow them to be traded for treatment?

One Harley Street doctor has taken egg-sharing a step further. A donor on
Professor Ian Craft's egg-giving scheme gives a whole harvest to the woman
paying for her treatment, then has a second harvest collected to use for her
own treatment. Professor Craft says it gives both women a higher chance of
getting pregnant, which must sound attractive to both sides. But when it
does not work according to plan it can leave the donor feeling like little
more than a battery hen. Women who agree to donate their eggs purely as an
act of charity have been left feeling equally cheated. One altruistic donor
we spoke to agreed to give her eggs to a childless couple, only to discover
straight after the operation that they had pulled out. She had not produced
enough eggs and they did not want to waste their money using them in a
course of IVF if there was little chance of success. Another woman became
ill after taking drugs to stimulate her ovaries, but the clinic went ahead
with the operation to remove her eggs anyway. Afterwards she had to spend
five days in hospital, and the consultant said she could have died.

The regulator has a tough job. Commercial pressures for private clinics to
get results have never been greater and policing them must be tricky. But it
is clear from our investigation some patients feel badly let down by the

UK law is envy of the world  says Suzi Leather

The reality of the European fertility industry's annual gathering, this year
in Madrid, is far less bizarre than recent media reports would suggest. It
tackles benign subjects such as lessening the risks associated with
reproductive technology by replacing only one or two embryos or eggs to
bring down the numbers of twins and triplets. This reflects exactly the
proposed code of practice of the Human Fertilisation and Embryology
Authority (HFEA).

In Madrid, there was also discussion of how to advance stem cell research
while outlawing reproductive cloning. Again, in Britain, Parliament has
already legislated to allow the research and ban the cloning.

The UK is regarded as a world leader in this kind of regulation. The Human
Fertilisation and Embryology Act 1990, which set up the Human Fertilisation
and Embryology Authority, is widely admired. But in such a fast-moving field
as this we cannot afford to stand still. Nor has our regulation proved

Now we have instituted wide-ranging reforms. Gone is the system of authority
members themselves chairing inspections; we have recruited and trained new
inspectors and expect existing inspectors to undergo updated training. There
is double witnessing for all stages of gamete and embryo transfer. We
require clinics to carry out an annual 100 per cent audit of embryos in
store. We have random unannounced inspections and have started to involve
patients in inspections to ensure that their voices are heard.

This year, we have also introduced an alert system whereby when clinics
report adverse incidents the HFEA alerts all other clinics in the country
with the details so they can ensure they learn from actual and potential
mistakes. This is truly ground-breaking: no such system operates either in
Europe or the United States.

Our job is certainly not made easier by the increasing gap between what the
science could do in 1990 and what is possible now. And there are methods of
assisted reproduction that cannot be regulated by the HFEA; gamete
intrafallopian transfer (Gift), for instance, was not deemed in need of
regulation by Parliament in 1990 because it did not involve the creation of
embryos outside the body. Yet Gift contributes to the multiple birth problem
and it is difficult to see why patients having this kind of assisted
reproduction treatment should not have the same protection as others having
IVF. Some reform would be helpful.

None the less, many other countries look with envy to the system of
regulation and control of IVF and embryo research we have achieved. And,
above all, the advances in treatment have benefited the people who have
become parents.

Suzi Leather is chairwoman of the Human Fertilisation and Embryology

Lifelines: 25 years of pushing back the embryology frontiers

25 July 1978 Louise Joy Brown, the world's first successful test-tube baby,
born in Britain. Technology is heralded triumph for medical science, but
causes many to raise ethical doubts over misuse.

1980 Two Australian teams succeed in IVF deliveries after drug-induced
superovulation in the mother, a step forward making IVF programmes viable.

1983 Freezing of human embryos by Linda Mohr and Alan Trounson, left,
Infertility Medical Centre (IMC) in Australia, results in world's first
frozen embryo baby.

1984 IMC team achieves the world's first birth in a woman without ovaries,
using donor eggs, an artificial menstrual cycle, and a special hormone

1988-89 Gamete intrafallopian transfer (Gift) used as alternative to IVF.
First successful pregnancies.

1990 Human Fertility and Embryology Act and Human Fertility and Embryology
Authority created.

1992 Rosanna della Corte, above, gives birth at 62 after IVF treatment by
Severino Antinori.

2000 The culture of embryonic stem cells opens way for made-to-order tissue
for transplant surgery.

2001 US and Italian teams working on first human clone.

2002 Antinori claims three human-cloned pregnancies taking place, two in
Russia, one in an Islamic country.


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