Stem Cell Research The Ethical Quandary of Reproductive Cloning

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					                                              THE NATION’S NEWSPAPER                                          PTK2003-03

To Kass, science's sword
cuts both ways                                  Stem Cell Research:
By Dan Vergano                    2-3
                                              The Ethical Quandary of
                                               Reproductive Cloning
Stanford plans
                                        The prospect of mining stem cells for their regenerative qualities presents
controversial                           medical science with the opportunity to finally resolve such afflicting
stem-cell work                          diseases as: Diabetes, Alzheimer's, Parkinson's Lou Gehrig's disease, and even
                                        cancer. Despite the miraculous potential these cells possess, enormous
                                        opposition has surfaced due to the process of the procedural extraction,
By Elizabeth Wiese                 4    which some scientists say is parallel to murder. When removing the stem
                                        cells, that embryo begins to degenerate and, eventually, dies; thus, giving
                                        weight to the assertion that a potential human being has been destroyed. The
The real face of cloning                rebuttal to that assertion lies in establishing when an organism could be
                                        defined as an actual human being. In this perspective, the arguments begin to
                                        mirror those expressed on behalf of the pro-life or pro-choice persuasion.
By Tim Friend                     5-8
                                        (This might shed light on the administration's resolute stance against
                                        financially contributing assistance to stem cell research.)

Blueprint for life                      Aside from the aforementioned argument, stem cell research has evolved
                                        from focusing primarily upon existing diseases to "reproductive cloning" -
By Tim Friend                   9-10
                                        the process of cloning a human being. This new development in research
                                        ushers in further possibilities of genetic engineering; however, it comes with
                                        greater political resistance. This mounting resistance towards cloning stems
                                        from previous research conducted on animals that have been fraught with
Clone claim produces                    peril. Additionally, the ban on federal funding, has forced the private sector to
flurry of bills                         allocate the capital necessary (which remains grossly unregulated) for
                                        research that spans beyond the financial scope of most investors. Such
                                        negative factors have done nothing more than hinder stem cell research by
By Richard Willing                11    crippling the researcher's ability to produce results due to minimal funding.

   Important dates in stem cell research:
   1952: Scientists demonstrate they can remove the nucleus from a frog egg, replace it with the nucleus of an
         embryonic frog cell, and get the egg to develop into a tadpole.
   1986: Sheep cloned by nuclear transfer from embryonic cells.
   1997: Scientists reveal Dolly the sheep, the first mammal to be cloned from cells of an adult animal.
   2001: Advanced Cell Technology of Worcester, Mass., says it produced a six-cell cloned human embryo,
         in research at harvesting stem cells.
   2002: Clonaid claims to produce first human clone.

                               Reprinted with permission. All rights reserved.

To Kass, science's sword cuts both ways
Bioethicist sees 'tragedy' in search for                                               "I'm not saying suffering is a good
                                                                                     thing," Kass says, but it might be a
immortality through genetics                                                         requirement for people to lead fulfill-
                                                                                     ing lives. Medicine's pursuit of perfec-
By Dan Vergano                             announcement of Bush's policy on          tion threatens this opportunity, he
USA TODAY                                  Aug. 9, 2001.                             suggests in the book. Immortality
                                                                                     once gained through genetic engi-
  Some people look at the promise of         What Americans got with Kass'           neering may erase the human drive
genetic therapy, stem cells and            appointment was a man who has             toward improvement, setting society
embryo selection and see longer, bet-      consistently warned of the dangers of     on a course both bland and barren.
ter lives for people, eased of suffering   science unchecked, during a four-
and misery.                                decade career that began as a physi-        But how do Kass' notions of dignity
                                           cian and biochemist at the National       play out for someone whose loved
  Bioethicist Leon Kass looks at the       Institutes of Health.                     one could be helped by biotechnolo-
same promise and sees a Brave New                                                    gy's advances?
World looming.                               "I'm only trying to raise questions,"
                                           Kass says of his latest book. The           Steve Leider of Sussex, N.J., has
  Death, suffering and ignorance of        specter of Aldous Huxley's Brave New      watched his 44-year-old wife, Linda,
one's genetic destiny aren't such bad      World haunts its chapters on topics       deteriorate from Alzheimer's disease
things, Kass argues in his new book,       that include cloning, embryo research     for eight years. He confesses he is
Life, Liberty and the Defense of           and the sale of organs. Kass warns of     "greedy" for embryonic-stem-cell
Dignity. The head of the President's       the "tragedy" of technology, the con-     research to yield some therapy that
Council on Bioethics, Kass warns that      tinuous effort to break down natural      can help her, and he would want that
although biotechnology might be able       human boundaries and remake the           for his wife regardless of where it led
to eliminate some of these burdens, it     human body. Like the genetically          humanity. But after reading Kass'
will take with them some of the            manipulated, drug-stupefied and           book at USA TODAY's request, he
virtues that make life meaningful and      obsessively entertained masses of         agrees someone probably will misuse
dignified.                                 Huxley's novel, humanity today faces      the technology, as Kass fears. Leider's
                                           a future of biotechnological advances     wife is too young to qualify for clini-
 "It's a very tough sell," he says.        that he believes threaten human dig-      cal trials of experimental Alzheimer's
                                           nity.                                     treatments, he says, and his experi-
  In the past year, Kass, 63, has                                                    ence has left him as suspicious as
emerged as a central figure in the           That dignity, he says, "rests on the    Kass of the motives behind medical
national debate over cloning, stem         fact our lives are limited and we         research.
cells and the future of biotechnology.     know it." Modern medicine's pursuit
A scholar at the American Enterprise       of cures for misery-causing diseases       "Maybe some things aren't worth
Institute, a think tank favoring pri-      is really an immortality hunt that        knowing," Leider concedes.
vate-enterprise solutions to prob-         threatens to stampede humankind
lems, and a University of Chicago pro-     into a world of sterile perfection, he      Kass also chastises the bioethicists
fessor, Kass was named by President        warns.                                    for blessing the coming genetic revo-
Bush to head a bioethics panel that                                                  lution in medicine. In overly rational
would oversee the administration's         He argues against the unquestioned        approaches to solving questions like
policy on embryonic-stem-cell              pursuit of genetic testing: "Many peo-    when to end care for terminally ill
research. Kass was identified as a key     ple, taking their bearings from life      patients and the pluses and minuses
adviser behind the administration's        lived open-endedly rather than from       of various organ-donation schemes,
plan, which allows federal funding of      preventive medicine practiced ration-     bioethicists have "turned the big
research on existing colonies, or lines,   ally, would prefer ignorance of the       human questions into pretty thin
of embryonic stem cells but bans it        future," he writes.                       gruel," he writes. They ignore the big
for any embryos created after the
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                         Stem Cell Case Study

question of where medicine is headed while picking apart            Even those who do not share Kass' political views
smaller issues, he suggests.                                      admire his larger philosophical approach, Elliott says. He
                                                                  says Kass has rescued a moral vocabulary that gets lost in
  One problem with his argument is that many bioethi-             mainstream bioethics -- words like duty, virtue, honor,
cists already are raising the same issues as Kass, says John      shame, dignity, degradation and the soul. In contrast,
Lantos of the University of Chicago, president of the             mainstream bioethics today prefers to make decisions
American Society of Bioethics and Humanities. In debates          based on maximizing individual choices and risk/benefit
at the group's meeting last week in Baltimore, much con-          ratios, Elliott says.
cern centered on bioethicists being co-opted by the phar-
maceutical industry and paid big bucks to provide a stamp           Although he is a favorite of conservatives, Kass' ambiva-
of approval to dicey research involving genes and condi-          lence about science and medical progress has come to
tions like anxiety and shyness.                                   mirror similar opinions expressed by those who are more
                                                                  liberal, Lantos says. The combination came into play this
   Moreover, says bioethicist Carl Elliott of the University of   year when technology critic Jeremy Rifkin joined abortion
Minnesota in Minneapolis, "The problem with his argu-             opponents in calling for a total ban on embryonic-stem-
ments is that many of them are about striving for immor-          cell research.
tality, when the real issue is not immortality but extended
life span. If genetic manipulation could allow people to            "Kass is willing to look at the larger human questions
live longer, healthier lives, what would be wrong with            about the meaning of life, death, sex and reproduction that
that? What if, instead of living to 75 or 80 in a state of        many bioethicists are afraid or unwilling to take on,"
increasing frailty, sickness and disability, people could live    Elliott says. "He brings a tremendous sense of moral seri-
to 100 in a state of health and vigor?"                           ousness to his subject."

                                  Reprinted with permission. All rights reserved.                                   Page 3

      Stanford plans controversial
            stem-cell work
 By Elizabeth Wiese

 Stanford University said Tuesday that it plans to develop         Similar attempts to do human somatic cell nuclear
new stem cells through a highly experimental scientific          transfer have failed. Researcher Roger Pederson at the
method that some consider cloning. It will be the first U.S.     University of California-San Francisco experimented with
university to publicly embark on this controversial work.        the technique in 2001 but in the end chose not to publish
                                                                 his results. Many have speculated that's because the
  The human stem-cell lines it develops will be used to          technique did not work.
study diseases such as cancer, diabetes, Parkinson's and
Lou Gehrig's disease. The research will take place at              A Massachusetts company called Advanced Cell
Stanford's new Institute for Cancer/Stem Cell Biology and        Technology created a furor when it claimed to have
Medicine. It will be privately funded and will avoid any         created clones using the technology, but in fact its embryos
conflict with President Bush's policy against using federal      only were able to divide into a few cells.
fund to create new stem-cell lines. The research will be led
by Irving Weissman, a strong proponent of stem-cell                Michael Manganiello, president of the Coalition for the
research and acknowledged leader in the field.                   Advancement of Medical Research, which supports stem-
                                                                 cell research, is encouraged by the Stanford move. "They're
  Stem cells, found in all human embryos at their earliest       going to do it. It's just a matter of perfecting the
stages, are capable of turning into any cells the body needs     technique."
for development. This gives them the potential for
replacing diseased or defective cells in people. But creating      The creation of lines of human embryonic stem cells
them requires the destruction of a tiny ball of cells called a   can't be done using federal money under a ban issued by
blastocyst, or pre-embryo, and many who believe that life        Bush in August 2001. Only research on stem-cell lines
begins at conception consider this the destruction of a          created before that date is eligible for federal funds. Bush
human being.                                                     has repeatedly stated his opposition to human cloning.

  Weissman denies that the method researchers will use at
Stanford, called "somatic cell nuclear transfer technology,"
is cloning. Many scientists make a distinction between this
type of cloning, which is only intended to create stem cells,
and reproductive cloning to create a new human being.

  "We are unanimously against human reproductive
cloning," Weissman said.

  In somatic cell nuclear transfer, the same technique
Scottish researchers used in 1997 to create Dolly the sheep,
the nucleus is removed from a non-reproductive cell --
neither an egg nor a sperm -- and inserted into a donated
egg cell that has had its nucleus removed. A pulse of
electricity causes the inserted nucleus to fuse into the egg
and begin reproducing, creating at least the beginnings of
an embryo.

                                 Reprinted with permission. All rights reserved.                                    Page 4

                                                                             and healthy but at the genetic level are a "gallery of hor-
                   The real                                                  rors," says Tanja Dominko, who conducted primate
                                                                             cloning research at the Oregon Regional Primate Research
                                                                             Center in Beaverton.

                   face of                                                     Advanced Cell Technology of Worcester, Mass., is the
                                                                             only scientific group that has acknowledged making
                                                                             cloned human embryos for research purposes. ACT med-
                  CLONING                                                    ical director Robert Lanza says he hopes one day to create
                                                                             cures for diseases such as Alzheimer's based on cells har-
                                                                             vested from cloned embryos. But his team has found that
                         By Tim Friend                                       cloning human embryos is no simple task. Only one has
                         USA TODAY                                           reached the six-cell stage, and it had significant genetic
                                              By Mike Tsukamoto, USA TODAY

   What will the world look like if renegade                                  Lanza says techniques are improving for purposes of
                                                                             medical research but not enough for reliably creating
   scientists persist in their experiments to                                healthy babies.
 clone a human? Experts say that it won't be
 pretty -- and that the era of human cloning                                 'Devastating birth defects'
              might not last long.                                             If cloned babies start showing up in hospital nurseries,
                                                                             scientists predict that they will be hooked up to respira-
  The Raelians, a religious group that believes space aliens                 tors because their hearts and lungs will have been
created life on Earth, grabbed headlines with their day-                     deformed. Feeding tubes also might be necessary for
after-Christmas claim that they had helped bring the first                   infants who have brain damage and cannot suckle. Others
human clone into the world. That claim remains                               might have extensive physical abnormalities. Even those
unproven, and most experts consider it a hoax.                               born with a normal appearance probably would experi-
                                                                             ence epilepsy, autism or behavioral abnormalities.
  But as the dust settles from the carnival atmosphere of
the past few weeks, other claims that clones are coming                        "All of the data on animal cloning demonstrates excep-
remain. The day of the clone may still be at hand.                           tionally high rates of fetal loss, abortion (and) neonatal
                                                                             deaths, and many cloned animals have devastating birth
  "It is absolutely inevitable that groups are going to try to               defects," says Gerald Schatten, vice chairman of obstetrics,
clone a human being. But they are going to create a lot of                   gynecology and reproductive science at the University of
dead and dying babies along the way," says bioethicist                       Pittsburgh School of Medicine.
Thomas Murray, president of the Hastings Center, a
bioethics think tank in Garrison, N.Y.                                         "When people are working with farm animals or labora-
                                                                             tory mice and there is a newborn that is suffering, veteri-
  Lost in the hype surrounding claims of human cloning                       narians can euthanize the animal. Are people who are
are hard scientific facts that show cloning animals is                       attempting to clone humans going to euthanize suffering
fraught with perils both before and after birth. Scientists                  children?"
are able to clone sheep, cattle, pigs, goats and mice, but
not without significant errors that commonly result in                         Two fertility specialists, Severino Antinori of Rome and
oversized fetuses, placental defects, lung, kidney and car-                  Panos Zavos of Lexington, Ky., have announced independ-
diovascular problems, brain abnormalities, immune dys-                       ent efforts to clone humans. Antinori announced in March
function and severe postnatal weight gain.                                   that a clone would be born around January. Zavos was to
                                                                             have begun his cloning efforts last fall. Antinori, Zavos and
  Efforts to clone primates have proven even more difficult                  Brigitte Boisselier of Clonaid, the Raelian company that
and might be impossible with current methods, scientists                     claims to have brought two cloned babies into the world,
say. Of particular concern are embryos that appear normal                    have made dozens of television appearances, and to the

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                        Stem Cell Case Study
chagrin of some critics, have acquired an air of legitimacy   Perils of reprogramming
by being invited to testify before Congress and the
National Academy of Sciences.                               In cloning, a scientist plucks the DNA containing the
                                                          copies of all of the mother and father's genes from a fully
  Yet none of these people has provided evidence of the   formed adult cell and inserts it into an egg that has been
ability to actually clone a human safely, Murray says.    stripped of its own nucleus of genes. Because there is no
When asked how they plan to avoid the types of deformi-   conception to spark the creation of an embryo, scientists
ties found in cloned animals, all three                                          must somehow reprogram that adult
repeatedly have stated that the scien-                                           DNA back to the brink of embryonic
tists who clone animals don't know         "People will keep claiming development as though fertilization
what they are doing.                                                             had just occurred.
                                          to have created cloned
  "If you are doing it the way of the     babies and eventually                       Reprogramming is perhaps the
animal cloners, yes, there is a risk,"    someone will succeed, but                most active area of cloning research,
Zavos told USA TODAY in August                                                     but scientists do not know how to do
when he introduced an anonymous           at what cost? A lot of                   it. So they must insert the DNA from
couple who said they plan to have a       damaged children and                     adult cells into dozens or even hun-
cloned baby. "We have the science of                                               dreds of eggs, give a little jolt of elec-
maternal fetal medicine, and we will
                                          disappointed parents."                   tricity to stimulate the cell to divide
be monitoring the pregnancies very                                                 and keep their fingers crossed. Most
carefully."                                                  - Bioethicist         scientists agree that only about 1% to
                                                                                   2% of these attempts in animals lead
  Many of the birth defects observed                      Thomas Murray            to a live birth. Of live births, only
in cloned animals are similar to the                                               about 20% appear to be normal.
gross physical deformities and mental retardation found in
rare genetic disorders caused by a phenomenon known as          The prevalence of genetic disorders in cloned animals
genetic imprinting, says Arthur Beaudet, professor of         and the lack of knowledge about reprogramming are the
genetics at Baylor College of Medicine in Houston.            primary reasons the scientists who work on cloning and
                                                              issues of reprogramming say they are skeptical that any-
  These disorders arise when the genes of the mother and      one can clone a human without genetic errors, Beaudet
father do not align for embryonic development as nature       and others say.
                                                                "Just from the scientific safety considerations alone, this
  Here's how imprinting occurs: At the moment of natural      is completely appalling," says Schatten, who is leading
conception, the 30,000 genes in the DNA of the father         efforts to clone rhesus monkeys. These efforts have been
must combine in the fertilized egg with the 30,000 genes      unsuccessful. "Those of us actively engaged in research
of the mother. Then there are two copies of every gene,       cloning have invested years and years of dedicated efforts
and together they form a master program to build an           and have encountered enormous difficulties in generating
embryo cell by cell, sometimes with genes from the father     a single" cloned embryo.
turned off to let the mother's genes do the work, and
other times the mother's genes stay silent to let the           Congress introduced another bill Jan. 8 to make human
father's do their part.                                       cloning in the USA illegal. But it has been unable to pass a
                                                              number of anti-cloning bills because the legislation has
  Imprinting disorders arise when either the mother's or      included a ban on research using cloning techniques to
father's genes imprint themselves on the program in           create stem cells.
places where they should have been minding their own
business -- like mom and dad talking at the same time           Researchers want to create tiny pre-embryos -- a ball of
rather than taking turns. In other words, both copies of a    cells that has not yet taken any form -- as sources of stem
gene are turned on when one of them should be silent,         cells; this type of research is called therapeutic cloning.
and the result is a genetic error that might cause a devel-   Supporters believe these primordial stem cells hold prom-
opmental disorder.                                            ise for treating a wide range of disorders including
                                                              Alzheimer's, cancer and diabetes. They say they fear that

                                 Reprinted with permission. All rights reserved.                                    Page 6
                         Stem Cell Case Study

the bath water will be thrown out with the baby and that          McMillen says human cloning raises key questions of
Congress will ban embryonic stem cell research.                 informed consent. Boisselier and Zavos have testified
                                                                before Congress that human cloning in their hands is not
  Opponents say it is immoral to use human embryos for          as risky as animal cloning and that they are unlikely to
research. Obtaining stem cells means destroying the             create damaged babies. In a trial, those comments could
embryo, which many people consider the same as abor-            come back to haunt them as they face cloning experts as
tion.                                                           expert witnesses for plaintiffs.

  But some experts believe the real stake in the heart of         "I expect that the animal cloners who have said that it is
human cloning will come the first time angry parents sue        too soon to clone humans would rally to the witness
a laboratory or a doctor over a genetically damaged cloned      stand," McMillen says.
child. A strong case for malpractice could be made. And
the same arguments that scientists are making today               What is unknown is whether parents can recover any-
against human cloning will become fodder for expert wit-        thing from a group that has few assets, whether cloners
nesses.                                                         that perform procedures outside the USA are liable or
                                                                whether the cloners will have malpractice insurance.
  "People will forgive a health care provider for making a
mistake as long as enough basic information was provided          What is certain is that parents of cloned children who
in advance, and the alternative to a treatment was death        have genetic defects will face high medical costs.
or a miserable life," says Scott McMillen of McMillen,          Imprinting disorders that cause mental retardation and
Reinhart and Voght, malpractice attorneys in Orlando.           physical abnormalities carry medical costs of $1 million to
"But in cloning we're not trying to save a life. We're trying   $20 million over the lifetime of the child, says Beaudet,
to create a life from scratch, and to do that with negli-       who treats children with imprinting disorders.
gence would be actionable. And ultimately it is a jury that
will decide whether there was negligence."                        "There are many longer-term issues to be considered,
                                                                such as: If we in fact develop this human cloning technol-
  Defense attorneys may be hard-pressed to find a sympa-        ogy, who will have access to it, and who will pay for the
thetic jury. A USA TODAY/CNN/Gallup Poll Jan. 3-5 shows         procedures, and who will pay for the medical care if these
86% of Americans say human cloning should be illegal.           children are born with medical defects?" asks Mark
                                                                Rothstein, director of the Institute for Bioethics, Health
  Boisselier says the parents of the supposedly cloned chil-    Policy and Law at the University of Louisville.
dren created by Clonaid all have "agreed to share the risk."
But Murray says parents can change their minds and sue,           Experts in the health insurance industry say the ques-
and the people who are so eager to clone humans should          tions have not been addressed on whether infants born
recall the Jesse Gelsinger case.                                with genetic disorders caused by cloning would or should
                                                                be covered. But legal experts say insurers might be justi-
Headed to the witness stand                                     fied in denying coverage if an infant is born as the result of
                                                                a procedure that mainstream science says is likely to cause
  Gelsinger died Sept. 17, 1999, at age 18, four days after     birth defects.
entering a gene-therapy experiment at the University of
Pennsylvania to treat his inherited liver disorder. At first,     At the moment, however, insurers believe they might be
Gelsinger's parents were sympathetic to the scientists. But     obligated to pay for costs. "Obviously this is a new area,"
as information emerged about risks and side effects that        says Susan Pisano of the American Association of Health
Gelsinger and his parents were never told about, they           Plans, which represents the managed-care community.
sued the hospital and everyone involved in the experi-          "Traditionally whether or not there has been some tech-
ment.                                                           nology or procedure that has led to a pregnancy, the baby
                                                                has been covered as a dependent. It is important to look at
  Gelsinger's parents stated in the lawsuit that risks were     the safety aspects of this.
downplayed and that the doctors were negligent in per-
forming the experiment. The university settled the suit for      "But I also think discussions about these new develop-
an undisclosed amount.                                          ments need to be broad. This is an issue for all of society."

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                        Stem Cell Case Study

  Several insurance companies declined to comment on           These parents must realize that a clone has a good
the record. But all suggested that unless changes are made   chance of being brain-damaged. A narcissist might end up
to specifically exclude cloned babies, the babies would be   with a mentally retarded version of himself or herself.
covered under group health plans. Individual plans could
exclude a high-risk clone.                                     Just a few years ago, human cloning appeared to be
                                                             something that would be left to science fiction while
 Murray says he is concerned for the people who would        mainstream scientists pursued cloning techniques to cre-
want to have themselves cloned. Boisselier, Zavos and        ate medical therapies. Scientists seem baffled that two fer-
Antinori have said the couples seeking their business are    tility specialists and the Raelians have commandeered the
motivated by the desire to have a child who has their        debate with unsubstantiated claims.
genes or to re-create a child who died.
                                                             Murray says it is tragic.
'Narcissism run wild'
                                                               "People will keep claiming to have created cloned
  Murray, whose daughter was murdered in 2000, says it       babies, and eventually someone will succeed, but at what
reflects "despair, grief and narcissism run wild. These      cost? A lot of damaged children and disappointed parents.
aren't wicked motives, but trying to spare yourself the
grief reflects a deep misunderstanding. Grief doesn't work     "That is the very sad baggage that cloning will carry into
that way, and cloning will not bring back a child."          the world."

                                Reprinted with permission. All rights reserved.                                  Page 8

                          Blueprint for life
                          Never mind human cloning.
             'Designer baby' technology could be the next big thing.
By Tim Friend
USA TODAY                                                            But as scientists begin to learn how particular groups of
                                                                   genes and patterns of gene activity are associated with specif-
  Had enough human cloning nonsense? If you want some-             ic personalities and traits, parents will be able to use in vitro
thing genuine to fret about, experts suggest considering what      fertilization to create and screen embryos for desired attrib-
already is occurring at the local in vitro fertilization clinic.   utes. Only the desirable embryos are implanted, and trouble-
                                                                   some Billy is never born.
  Aided by advances in a variety of diagnostic screening tech-
nologies and the rapidly expanding knowledge of human                Sound creepy, or does it make you want to sign up? Either
genes, fertility experts are able to screen test-tube embryos      way, without an informed public debate, experts say, this
for a wide variety of genetic diseases and create healthy          could be happening within 10 years.
                                                                     A USA TODAY/CNN/Gallup Poll shows that 88% of people
  Of course, that's a good thing. But the same progress could      oppose allowing parents to select the genetic traits of their
lead to screening embryos for characteristics that extend far      children.
beyond health. Sooner or later, the stork will be able to carry
babies that were screened as embryos and selected for birth          Congress is focused on human cloning and seems deter-
because they possess genetic profiles linked with traits such      mined to tie it to embryonic stem cell research and -- rightly
as intelligence, personality, a specific aptitude and physical     or wrongly -- abortion politics. Stem cells are derived from
beauty.                                                            human embryos that are destroyed in the process.

  "We should forget about cloning. The reproductive issues          Fertility clinics, meanwhile, are unregulated, and Congress
we need to think about right now are tied to the genetic           appears to have no interest in regulating them, says Mark
screening of embryos," says Gregory Stock, director of UCLA's      Rothstein, legal expert at the University of Louisville.
Program on Medicine, Technology and Society. "We are
beginning to take control of our own evolutionary future. We       Advances on the horizon
can quibble about what will occur first and when, but it is
clear we will apply new knowledge and technology in any              Fertility clinics routinely create, genetically screen and
way that we think will contribute to our well-being."              destroy thousands of embryos a year to help parents have
                                                                   healthy babies. Designer babies are only a matter of more
  The subject of designing children underscored the themes         sophisticated screening tests.
of The Storefront Genome conference Sunday at UCLA. The
conference is the first of a series sponsored by UCLA's new          The federally funded Human Genome Project, which is
Center for Society, the Individual and Genetics. The goal is to    decoding the human genetic instruction manual, is revolu-
stimulate debate about the difficult bioethical issues that sci-   tionizing the understanding of human disease and many
entists, like errant paperboys, seem to be tossing at the pub-     behavioral traits. It has given birth to a dynamic field of popu-
lic's doorstep.                                                    lation genetics in which the DNA of thousands of people can
                                                                   be analyzed for a wide variety of predispositions and charac-
  When it comes to children, everyone knows that siblings          teristics.
can be quite varied in their personalities and appearance.
Environment plays a strong role in shaping a person's life. But      Kari Stefansson, founder and president of deCODE Genetics
genes set the stage. Embryos are never created equal. Think of     in Reykjavik, Iceland, has pioneered a powerful new brand of
your own genetic makeup as the hand of cards you were dealt        population genetics. His company is analyzing DNA samples
at conception. With each conception in a family comes a new        from 30,000 Icelanders. DeCODE has developed computer
shuffling of the deck and a new hand. That's partly why little     programs to mine the data for associations and patterns that
Bobby sleeps through the night as a baby, always behaves and       help them track genes that play a role in diseases. They have
seems to love math, while brother Billy is colicky, never lis-     found genes involved in 26 conditions.
tens and already is the head of a gang in kindergarten.

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                           Stem Cell Case Study

  Genetically designed babies may be a decade away
  "We can look at how variations in the genome travel togeth-       ground of genes that are inactive. Can gene-expression pat-
er with different diseases," Stefansson says. The data produced     terns for behavior be far behind?
patterns that led to genes involved with specific diseases.
DeCODE also is looking for genes involved with longevity.             Gene-expression profiles are identifiable through a technol-
Stefansson says the company is not working on genes associ-         ogy called the gene chip, a tiny device that can read informa-
ated with personality. But another company could in the near        tion on thousands of genes. Gene-expression profiles from the
future.                                                             chips can then be analyzed by computer. Scientists can com-
                                                                    pare known expression profiles to DNA from a person or even
  Biotechnology and computing are converging in many ways,          an embryo. The information could be adapted for genetic
Stock says, including the ability to create pocket-sized "gene      screening tests.
chips" that may soon read a person's entire genetic profile.
                                                                      Last February, fertility specialists at Reproductive Genetics
  Meanwhile, fertility experts continue to improve the art of       Institute and IVF Illinois Inc. in Chicago reported screening
creating robust human embryos. As all of these technologies         embryos at high risk for inheriting a rare genetic mutation
improve, Stock says, they will become cheaper and more              that causes early-onset Alzheimer's disease. They prepared an
accessible to the public. To ensure that the public isn't left      individualized test based on the family's mutation.
with a scientific monster that no one knows how to handle,
the public should soon decide how it wants to handle the              Next they used a procedure called pre-implantation genetic
potential to choose children's genes.                               diagnosis to test the DNA of embryos for the mutation. They
                                                                    were able to select an embryo that was unaffected and
  "The Human Genome Project is the Manhattan Project of             implant it in the mother's womb. This type of diagnosis is per-
biology. This time we need to get it right," says UCLA              formed for more than 50 genetic conditions.
Chancellor Albert Carnesale, whose biotechnology initiative
financed the center.                                                Controversial technologies

Too simple a notion                                                   The diagnosis also is performed for sex selection of embryos
                                                                    in which males are at risk for carrying diseases such as
  People have talked about creating designer babies since the       Duchenne muscular dystrophy. But what began as a medical
arrival in 1978 of Louise Brown, the first baby born via in vitro   procedure is now performed for "family balancing."
fertilization, but debates have focused on adding genes for X
or Y to enhance a child's potential. That notion is too simplis-      The Pew Charitable Trusts sponsored a survey of 1,211 peo-
tic, says Bonnie Steinbock, chairman of philosophy at the           ple in December that found two-thirds of respondents
University at Albany, State University of New York.                 approve of using reproductive genetic testing to help parents
                                                                    have a baby free of a serious genetic disease. But more than
  "People may have the misunderstanding that a single gene          70% said they disapprove of using the same technologies to
controls either a disease or less plausibly a non-disease trait,"   identify or select traits such as strength or intelligence.
she says. "You hear about 'the' breast cancer gene or 'the' gay
gene. This is over-oversimplified and gives a false picture of        Steinbock is more skeptical that designer babies are on the
the way genes work."                                                horizon. She says IVF procedures are invasive and involve
                                                                    powerful drugs to make women ovulate. She doesn't believe
  Individual genes for superior intelligence or a bubbly per-       that parents will find the effort and cost worth "an extra 2
sonality probably do not exist as they do for some diseases.        inches of height" for a baby.
Instead, genes work together in complex and mysterious ways
to influence behavior. That influence is further complicated by       But Stock and others point out that 35,000 babies a year are
exposure to the environment, whether that is the womb or            born by IVF today and that couples already are asking for such
the home, she says.                                                 things.

  Advancing from single-gene simplicity, scientists are now           Says Steinbock: "What we are legitimately concerned about
discovering specific patterns of gene expression associated         are the people who want to do this. There are parents who
with diseases. Last month, scientists at the Dana Farber Cancer     want the perfect child. Perhaps there are more stage mothers
Institute reported that the potential of a tumor to spread is       and football fathers than we would like to think. But I am very
associated with a specific gene-expression pattern, which           skeptical that people will be lining up."
basically consists of genes that are active against the back-

                                    Reprinted with permission. All rights reserved.                                      Page 10

   Clone claim produces flurry of bills
Some would ban cloning of                                        bill banning the cloning technique in 2001. But such a plan
                                                                 stalled in the Senate last year, after biotech industry lobby-
humans; others would limit it                                    ists, disease sufferers and others who favor preserving
                                                                 research cloning weighed in.
By Richard Willing
USA TODAY                                                           Six states have produced cloning regulations since 1997,
                                                                 when Scottish researchers announced the birth of Dolly, the
  The Raelian religious sect may or may not have produced        first sheep cloned from an adult cell. (Dolly, suffering from
a cloned human baby.                                             lung disease, was euthanized this month.) Michigan and
                                                                 Iowa ban all cloning, and California, Louisiana, Virginia and
  But its unproven claim to have done so                                             Rhode Island ban cloning aimed at pro-
is producing its own bumper crop of off-                                             ducing a child, according the National
spring. At least 48 bills to ban or to regu-       "Cloning seemed like              Conference of State Legislatures.
late human cloning have been introduced
                                                   science fiction, until
in state legislatures and Congress since                                               The U.S. House is scheduled to vote
the Raelians' announcement in late                 one day there it was
                                                                                     Thursday on another full cloning ban. Its
December. Only one cloning bill, a ban             on the news."                     prospects for clearing the Senate remain
enacted by the Iowa Legislature, was                                                 cloudy. If it passes, it likely would
approved earlier in 2002, before the                            - T.R. Rowe, supercede the state laws already in place.
Raelians' claim. None of this year's pro-
posals has become law.                              Republican member of
                                                                                       A hearing this month in Indiana's House
                                                    the Connecticut House of Representatives was typical of the
  Some of the new proposals to limit or                   of Representatives recent debate. Advocates of a cloning ban
ban cloning were in the works before the                                             argued that research cloning is akin to
cloning claim by the Raelians, who believe                                           abortion, because the clone is destroyed
that human life was created by space aliens. But legislators     in the process. They argued that it is wrong to create human
say that anxiety over the Raelians' claim helped propel the      life as a commodity, even for well-intentioned research.
wave of proposals.                                               And they said that permitting research cloning would lead
                                                                 to baby cloning by creating a pool of cloned embryos that
  "Cloning seemed like science fiction, until one day there it rogue scientists could tap.
was on the news," says T.R. Rowe, a Republican in the
Connecticut House of Representatives who has introduced a           Proponents of research cloning argued that it is humani-
bill that would ban all cloning. "Just like that, it has become  tarian and that baby cloning can be prevented by strict con-
part of the public debate."                                      trols and criminal penalties. Academics and biotechnology
                                                                 industries in Indiana would move elsewhere if the state
  In cloning, scientists mimic reproduction by inserting         proved unfriendly to research such as cloning, they argued.
DNA from the nucleus of an adult cell into an egg cell           Echoing scientists' claims, a multiple sclerosis sufferer said
whose nucleus has been removed. The resulting embryo is a that cloning research offered gave on clones held out hope
genetic copy of the adult from whom the nucleus was              for a cure.
                                                                    "The (committee) chairman asked me if we couldn't get
  Scientists have produced cloned sheep and cats but,            together on a compromise of some sort," says Rep. Peggy
despite the Raelians' claims, no known humans. Some legis- Welch, a Bloomington Democrat who has proposed banning
lators say the cell-transfer technique used to create a cloned all forms of cloning. "Ordinarily, I'd jump at the chance but
embryo should be banned before that can happen. Others           not with cloning. On an issue as fundamental as this, there
would permit it as long as the clones produced were used         just may not be any room to compromise."
for research and not to produce babies.

 Because of that division, getting cloning bans passed has
proven difficult. The U.S. House of Representatives passed a

                                 Reprinted with permission. All rights reserved.                                     Page 11
              Future implications                                 Discussion questions
The future of stem cell research, at this particular point in     1. Should the state have the right
time, appears bleak at best. The research lacks the funds         to fund stem cell research if the
necessary to validate the cells proposed properties through       federal government does/does
laboratory experimentation. The President's Council passed        not?
a four-year moratorium on Bioethics to allow for further
public debate, which will undoubtedly impede the already          2. Is Kass right in stating that
sluggish political banter that has taken place for the past       stem cell research is a futile quest
                                                                  for immortality?
two years. The ethical debate over the acquisition of stem
cells for the sole purpose of eradicating such devastating
                                                                  3. Is it ethically or morally wrong
diseases as cancer should not be discussed lightly. The           to take life in order to save it?
probability of obtaining a possible cure and potentially          (The embryo in this case.)
saving thousands of lives must remain at the forefront of
consideration. Nevertheless, if such a cure comes at the cost     4. If reproductive cloning were
of destroying the life of a potential human being, that           legal, should certain limitations be
particular research method must be discarded for an ethical       implemented (i.e., no cloning of
alternative. The proposition of stem cell regeneration does       the deceased or hybrid soldiers of
not dissipate because one method of implementation is             war.)
ethically unsound; therefore, varied avenues can and must
be considered if extraction through a four to six day old
embryo is deemed "morally reprehensible." It remains
imperative to keep in mind that if any positive future
implications are to occur from the cultivation of
experimentation of stem cells, ethical integrity, not politics,
must prevail.

                                 Additional resources

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