Designer babies

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Designer Babies
updated 10:38 a.m. EDT, Thu October 30, 2008
Designer babies: Creating the perfect child
LONDON, England (CNN) -- Bring your partner, grab a seat, pick up your baby catalog and start choosing.
Would you be comfortable selecting what cosmetic features you want your baby to have?
Will you go for the brown hair or blond? Would you prefer tall or short? Funny or clever? Girl or boy? And do you want
them to be a muscle-bound sports hero? Or a slender and intelligent book worm?
When you're done selecting, head to the counter and it's time to start creating your new child.
Does this sound like a scary thought?
With rapid advances in scientific knowledge of the human genome and our increasing ability to modify and change
genes, this scenario of "designing" your baby could well be possible in the near future.
Techniques of genetic screening are already being used -- whereby embryos can be selected by sex and checked for
certain disease-bearing genes. This can lead to either the termination of a pregnancy, or if analyzed at a preimplantation stage when using In Vitro Fertilization (IVF), can enable the pregnancy to be created using only nondisease bearing genes.
British scientists last week developed a "genetic MoT" test, which offers a universal method of screening embryos for
diseases using a new technique of karyomapping, which is more efficient than previous processes.
The test would be taken on a two-day-old IVF embryo and is yet to be validated, but it could mark a significant
change; allowing doctors to screen for gene combinations that create higher risks of diabetes, heart disease or
cancer.
Experts estimate the test, if licensed by the Human Fertilization and Embryology Authority, could be available for
around $3000.
In the future we may also be able to "cure" genetic diseases in embryos by replacing faulty sections of DNA with
healthy DNA, in a process called germ line therapy. This has been performed on animal embryos but is currently
illegal for humans.
Furthermore, the developing technologies of genetic alteration open up a whole new set of possibilities -- which could
result in so-called "designer babies."
The technique -- known as inheritable genetic modification -- modifies genes in eggs, sperm or early embryos and
results in the altered genes being passed on to future generations. Should parents be allowed to create their
babies?
This could potentially irreversibly alter the human species. So, the obvious question arises: should we be doing this?
Some countries have made genetic screening or alteration illegal by law, and the ethical questions surrounding the
uses of the technology are vast -- creating a palpable tension over the subject.
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In September, Internet giants Google and Microsoft withdrew adverts for sex selection products and other services
considered illegal in India when they were threatened with legal action.
The Center for Genetics and Society is trying to encourage debate on the topic -- as soon as possible.
Executive director of the organization, Richard Hayes, told CNN that the general public of most countries was missing
out on taking part in the debate.
"The debate has taken place amongst scientists and science journalists, but average people feel overwhelmed with
the technical detail. They feel disempowered."
Hayes said his organization supported the use of embryo screening to help prevent the passing on of serious
diseases and disorders like Cystic Fibrosis, but is wary of other technologies and how genetic screening and
alteration can be misused.
"We support the use of that to allow couples at risk to have healthy children. But for non-medical, cosmetic purposes,
we believe this would undermine humanity and create a techno-eugenic rat race," Hayes said.
He said there were immense amounts of resources being poured into developing gene altering techniques and no
laws in many countries to stop them from starting clinics that could offer selected cosmetic traits.
"As technology advances it is possible that any number of human characteristics in part influenced by genes could
come under human control. Right now there is an enormous amount of research being conducted to correlate specific
genes with specific characteristics."
One of the organizations researching genetic alteration is the University of California Irvine's Sue and Bill Gross Stem
Cell Research Center.
Professor of biological chemistry and developmental and cell biology, and co-director of the Center, Peter Donovan,
feels the research could have massive benefits.
After his team discovered a greatly improved method for genetically manipulating human embryonic stem cells earlier
this year, Donovan said:
"The ability to generate large quantities of cells with altered genes opens the door to new research into many
devastating disorders.
"Not only will it allow us to study diseases more in-depth, it also could be a key step in the successful development of
future stem cell therapies," Donovan
But according to Hayes the potential for misuse of this technology could have dire consequences for the human race.
"This runs many risks. It's used in many countries to avoid the birth of female children.
"The technologies are going to be accessible to affluent couples and would be used in ways that could increase
inequality. The last thing we need now is a genetic elite.
"This designing aspect would also lead to an objectification of children as commodities."
Hayes said it was important that people began debating the issues now so the correct "rules, regulations and
regulatory oversights" could be established before the technology was complete and accessible.
Children to Order: The Ethics of
'Designer Babies'
By Tia Ghose, Staff Writer | March 13, 2014 02:00pm ET
Creating designer babies who are free from disease and super athletic or smart may
finally be around the corner.
But American society hasn't fully thought out the ethical implications for the future of
baby making or policies to regulate these techniques, an ethicist argues in an article
published today (March 13) in the journal Science.
"We're on the cusp of having much more information, and the appearance of having
much greater discretion, in choosing the traits of our children," said article author
Thomas H. Murray, a bioethicist at the Hastings Center, a nonprofit research center in
Garrison, N.Y. People also need to think about what parents and doctors will do with the
technology, he said. "What use will they make of it, and should there be limits?"
In fact, in February, the Food and Drug Administration (FDA) met to consider
conducting clinical trials to test out genetic manipulation techniques to prevent
mitochondrial disease from occurring in offspring. [Top 10 Mysterious Diseases]
New technologies
Since the 1990s, the prospect of futuristic technologies such as human cloning or
selecting for superhuman traits have stoked public fears about "designer babies."
Back then, most of these techniques were purely speculative, but now several methods
for genetic selection are either already possible or will soon become so.
For instance, parents can choose to screen embryos created via in vitro fertilization
(IVF) for sex or diseases, a process known as pre-implantation genetic diagnosis.
Scientists have also recently reported a method of extracting defective mitochondria,
the energy powerhouses of cells, from a woman's egg and replacing them with
healthymitochondria from a donor egg.
And new tests can detect fetal DNA circulating in a woman's blood stream early on in
pregnancy, determining sex or catching errors in the number of chromosomes, Murray
told Live Science. Abnormal chromosome numbers cause disorders as Down
syndrome. [5 Myths About Fertility Treatments]
And though parents may not be able to screen their future babies forgenes that confer
intelligence, hair color or athletic aptitude just yet, the company 23andme recently
applied for a patent on such tests, the article notes. (Traits such as intelligence and
height are governed by a complicated interplay of dozens of genes and the
environment, so such tests are still a ways away, Murray said.)
Soon it may be possible to screen the entire genome of a fetus, or to select a child
based on its odds of long-term diseases such as Alzheimer's or diabetes, Murray said.
No consensus
Yet most of the major medical societies, such as the American Society for Reproductive
Medicine (ASRM) and the American Congress of Obstetricians and Gynecologists
(ACOG), have wildly different attitudes about when and where these techniques should
be allowed, the study noted. The ASRM typically defers to a client's wishes on issues
such as sex selection, for instance, whereas the ACOG advocates prohibiting sex
selection because of its potential to lead to sex discrimination against women in society.
The FDA, meanwhile, only regulates the potential safety and efficacy of these
techniques, not their ethical implications.
But when bringing a new child into the world, society has an obligation to determine
whether the technologies used to do so actually benefit or harm the infant. On a larger
scale, it's possible that giving parents the ability to select the genetic traits of their
offspring could subtly worsen the relationship between parents and children.
"One of my concerns is if we let parents think they are actually choosing and controlling
[their child's outcome], then we set up all that dynamic of potentially tyrannical
expectations over what the child will do or be," Murray said.
But the idea that parents can determine children's eventual identities has always been
somewhat illusory.
"You could clone Michael Jordan, but Michael Two might want to be an accountant,"
Murray said.
Fears overblown
Not everyone thinks these ethical issues are so worrisome.
While safety, prospective benefits and medical claims need to be evaluated, designer
babies may not present such a new ethical arena, after all. It's not clear that there's
anything unique, from an ethical perspective, in parents trying to foster certain traits
through genetics as compared to using tutors, music lessons or instilling discipline, said
Bonnie Steinbock, a philosopher at the University at Albany, State University of New
York (SUNY), who was not involved in the work.
"I don't think there's anything wrong with the attempt to make our children smarter or
kinder," Steinbock told Live Science. "If we did think that was wrong, we should give up
parenting, and put them out on the street."
And even if there were some potential harms of "designer babies," those drawbacks
may not be worth regulating, said John Robertson, a law and bioethics professor at the
University of Texas at Austin, who was not involved in the work.
If there were a family that really valued musicality, for instance, and "if they have four
embryos and one has the perfect pitch trait, then why should they not be able to choose
that embryo?" Robertson said.
The potential harms, such as parents forcing a child to study trombone when the kid
would rather play soccer, don't seem big enough to interfere with parental choice, he
added.
Original article on Live Science.
Ethics of Designer Babies
by Sarah Ly Keywords: Reproductive rights, Genetic engineering, Eugenics
A designer baby is a baby genetically engineered in vitro for specially selected traits, which can vary
from lowered disease-risk to gender selection. Before the advent of genetic engineering and in
vitro fertilization (IVF), designer babies were primarily a science fiction concept. However, the rapid
advancement of technology before and after the turn of the twenty-first century makes designer
babies an increasingly real possibility. As a result, designer babies have become an important topic
in bioethical debates, and in 2004 the term “designer baby” even became an official entry in
the Oxford English Dictionary. Designer babies represent an area within embryology that has not yet
become a practical reality, but nonetheless draws out ethical concerns about whether or not it will
become necessary to implement limitations regarding designer babies in the future.
The prospect of engineering a child with specific traits is not far-fetched. IVF has become an
increasingly common procedure to help couples with infertility problems conceive children, and the
practice of IVF confers the ability to pre-select embryos before implantation. For
example, preimplantation genetic diagnosis (PGD) allows viable embryos to be screened for various
genetic traits, such as sex-linked diseases, before implanting them in the mother. Through PGD,
physicians can select embryos that are not predisposed to certain genetic conditions. For this
reason, PGD is commonly used in medicine when parents carry genes that place their children at
risk for serious diseases such as cystic fibrosis or sickle cell anemia. Present technological
capabilities point to PGD as the likely method for selecting traits, since scientists have not
established a reliable means of in vivo embryonic gene selection.
An early and well-known case of gender selection took place in 1996 when Monique and Scott
Collins saw doctors at the Genetics & IVF Institute in Fairfax, Virginia, for in vitro fertilization. The
Collins’ intended to conceive a girl, as their first two children were boys and the couple wanted a
daughter in the family. This was one of the first highly publicized instances of PGD in which the
selection of the embryo was not performed to address a specific medical condition, but to fulfill the
parents’ desire to create a more balanced family. The Collins’ decision to have a “designer baby” by
choosing the sex of their child entered the public vernacular when they were featured in Time
Magazine’s 1999 article "Designer Babies". Though the Collins’ case only involved choice of gender,
it raised the issues of selection for other traits such as eye color, hair color, athleticism, or height that
are not generally related to the health of the child.
Prior to the Collins’ decision to choose the sex of their child, The Council on Ethical and Judicial
Affairs released a statement in 1994 in support of using genetic selection as a means to prevent,
cure or specific diseases, but that selection based on benign characteristics was not ethical. Some
ethical concerns held by opponents of designer babies are related to the social implications of
creating children with preferred traits. The social argument against designer babies is that if this
technology becomes a realistic and accessible medical practice, then it would create a division
between those that can afford the service and those that cannot. Therefore, the wealthy would be
able to afford the selection of desirable traits in their offspring, while those of lower socioeconomic
standing would not be able to access the same options. As a result, economic divisions may grow
into genetic divisions, with social distinctions delineating enhanced individuals from unenhanced
individuals. For example, the science-fiction film Gattaca explores this issue by depicting a world in
which only genetically-modified individuals can engage in the upper echelon of society.
Other bioethicists have argued that parents have a right to prenatal autonomy, which grants them
the right to decide the fate of their children. George Annas, chair of the Department of Health Law,
Bioethics, and Human Rights at Harvard University has offered support for the idea of PGD, and the
designer babies that result, as a consumer product that should be open to the forces of
market regulation. Additionally, other arguments in favor of designer baby technologies suggest that
parents already possess a high degree of control over the outcome of their children’s lives in the
form of environmental choices, and that this should absolve some of the ethical concerns facing
genetic selection. For example, parents keen on establishing musical appreciation in their children
may sign them up for music classes or take them to concerts on a regular basis. These choices
affect the way a child matures, much like the decision to select certain genespredisposes a child to
develop in ways that the parents have predetermined are desirable.
The increased ability to control and manipulate embryos presents many possibilities for improving
the health of children through prenatal diagnosis, but these possibilities are coupled with potential
social repercussions that could have negative consequences in the future. Ultimately, designer
babies represent great potential in the field of medicine and scientific research, but there remain
many ethical questions that need to be addressed.
Sources
1. Agar, Nicholas. American Institute of Biological Sciences. “Designer Babies: Ethical
Considerations,”http://www.actionbioscience.org/biotech/agar.html (Accessed October 16, 2010).
2. Annas, George. “Noninvasive Prenatal Diagnostic Technology: Medical, Market, or Regulatory
Model?” Annals of the New York Academy of Sciences 721 (1994): 262–8.
3. Council on Ethical and Judicial Affairs, American Medical Association. “Ethical Issues Related to
Prenatal Genetic Testing,” Archives of Family Medicine 3 (1994): 633–42.
4. Kitcher, Philip. “Creating Perfect People.” In Companion to Genetics, eds. Justine Burley and John
Harris, 229–42. Boston: Blackwell Publishing, 2004.
5. Lemonick, Michael. “Designer Babies.” 153, Time Magazine, January 11, 1999.
6. Morales, Tatiana. CBS News. “Choosing Your Baby’s
Gender.”http://www.cbsnews.com/stories/2002/11/06/earlyshow/contributors/emilysenay/main52840
4.shtml (Accessed October 17, 2010).
7. Verlinsky, Yuri. “Designing Babies: What the Future Holds,” Reproductive BioMedicine Online 10
(2005): 24–6.
'Designer babies'
debate should start,
scientists say

By James GallagherHealth editor, BBC News website
19 January 2015
Rapid progress in genetics is making "designer babies" more likely and society needs to be prepared,
leading scientists have told the BBC.
Dr Tony Perry, a pioneer in cloning, has announced precise DNA editing at the moment of conception in mice.
He said huge advances in the past two years meant "designer babies" were no longer HG Wells territory.
Other leading scientists and bioethicists argue it is time for a serious public debate on the issue.
Designer babies - genetically modified for beauty, intelligence or to be free of disease - have long been a topic
of science fiction.
This is not HG Wells, you can imagine people doing this soonDr Tony Perry, University of Bath
Dr Perry, who was part of the teams to clone the first mice and pigs, said the prospect was still fiction, but
science was rapidly catching up to make elements of it possible.
In the journal Scientific Reports, he details precisely editing the genome of mice at the point DNA from
the sperm and egg come together.
Dr Perry, who is based at the University of Bath, told the BBC: "We used a pair of molecular scissors and a
molecular sat-nav that tells the scissors where to cut.
"It is approaching 100% efficiency already, it's a case of 'you shoot you score'."
New era
It is the latest development of "Crispr technology" - which is a more precise way of editing DNA than anything
that has come before.
It was named one of the top breakthroughs in 2013, hailed as the start of a new era of genetics and is
being used in a wide-range of experiments in thousands of laboratories.
As well simply cutting the DNA to make mutations, as the Bath team have done, it is also possible to use the
technology to insert new pieces of genetic code at the site of the cut.
It has reopened questions about genetically modifying people.
Prof Perry added: "On the human side, one has to be very cautious.
"There are heritable diseases coded by mutations in DNA and some people could say, 'I don't want my children
to have these mutations.'"
This includes conditions such as cystic fibrosis and genes that increase the risk of cancer.
"There's much speculation here, but it's not completely fanciful, this is not HG Wells, you can imagine people
doing this soon [in animals].
"At that time the HFEA [the UK's fertility regulator] will need to be prepared because they're going to have to
deal with this issue."
He said science existed as part of a wider community and that it was up to society as a whole to begin
assessing the implications and decide what is acceptable.
Time for debate
Prof Robin Lovell-Badge, from the UK Medical Research Council, has been influential in the debate around
making babies from three people and uses the Crispr technology in his own lab.
There needs to be a debate... and some rational thought rather than knee-jerk reactions that,
'No you can't possibly do that'Prof Robin Lovell-Badge, Medical Research Council
He said testing embryos for disease during IVF would be the best way of preventing diseases being passed
down through the generations.
However, he could see such potential uses
of "germ-line therapies" for men left
infertile by damaging mutations.
While they can have children through
IVF, any sons would still have the
mutations and would in turn need IVF.
Genetic modification could fix that.
It would also be useful in circumstances
when all embryos would carry the
undesirable, risky genes.
Prof Lovell-Badge told the BBC News website: "Obviously in the UK, this is not allowed and there would
have to be a change in regulations, which I suspect would have enormous problems.
"But it is something that needs to start to be debated.
"There has been a blanket ban on germ-line therapy, so there needs to be a debate about that and some rational
thought rather than knee-jerk reactions that, 'No you can't possibly do that.'"
Such a debate would also have to move beyond therapies into the field of babies designed to have desirable
traits.
Some alternations would only require small changes to DNA, such as some changes to eye colour or to make a
child HIV-resistant.
The respected Nuffield Council on Bioethics is understood to be considering a report on the issue.
Its verdict in 2012 that it was ethical to create babies from three people formed a core part of the
public debate on the issue.
At the time it said a much wider debate on germ-line therapy was still needed.
Complex ethics
Its director, Hugh Whittall, told the BBC: "I think this is a challenge, for all of us, we should get onto looking
at this fairly rapidly now."
He said the field raised questions of social justice around techniques available only to the rich and what
constituted identity as well as "issues of governance and regulation".
Dr David King, from the campaign group Human Genetics Alert, echoed calls for the public to engage with the
issue.
He said: "I think it's pretty inevitable that we'll get to a point where it's scientifically possible, certainly these
new techniques of genome editing have made something look much more feasible than it did five years ago.
"But that does not mean to say it's inevitably the way we have to go as a society."
This is still a matter of science fiction and there is a huge amount of research - particularly on unwanted
mutations, efficiency and safety - that needs to be done before any attempt of humans would even be
considered.
A spokesman for the UK's Human Fertilisation and Embryology Authority said: "We keep a watchful eye on
scientific developments of this kind and welcome discussions about future possible developments."
He said it "should be remembered that germ-line modification of nuclear DNA remains illegal in the UK" and
that new legislation would be needed from Parliament "with all the open and public debate that would entail"
for there to be any change in the law.
We're Already Designing Babies
Even today, parents are selecting for the traits they want in their offspring. But
how far should the genetic tailoring go?
John Javellana/Reuters
ASPEN, Colo.—A new type of in-vitro fertilization procedure allows doctors to
transfer the mitochondrial DNA from one woman into the egg of another,
effectively creating a baby with three parents: The father, the egg mom, and
the mitochondrial mom. The method is intended for a tiny fraction of women
who have what's known as a "mitochondrial disease," which increases the
likelihood of bearing children with severe birth defects.
Both the U.K. and U.S. are currently debating permitting clinical trials for the
technique. As the New York Times described in a recent story:
In Britain, national law prohibits altering the germ line, but Parliament is very
likely to vote later this year on whether to allow mitochondrial replacement to
move forward. Likewise, this February, the F.D.A. held a meeting to examine
the possibility of allowing clinical trials. If either gives the go-ahead, it will be
the first time a government body expressly approves a medical procedure that
combines genetic material of three people in a heritable way.
Many find the mitochondrial procedure morally questionable because of how
close it seems to playing God, or Nature, or Whoever you think is in charge of
making kids. Penetrating the inside of a cell and tampering with its contents
is, at best, controversial, and at worst, "walking in Hitler’s footsteps," as one
angry letter to the FDA put it. Some worry it's in the same sci-fi realm as
"designer babies."
We don't know yet what the risks and benefits of mitochondrial replacement
will be. But in a way, we're already designing babies, and medical technology
will only allow us to do it to an increasing degree of precision. As the lawyer
Nita Farahany put it during a recent panel during the Aspen Ideas Festival,
which is organized jointly by the Aspen Institute and The Atlantic, there are
now countless ways that parents are crafting their ideal children, either
through natural selection or biotech.
"Who we choose as a potential mate—that's selection bias," Farahany said.
"People who have abortions based on particular types of birth defects or birth
anomalies. You can do full genomic sequencing. You can also select sperm
donors based on traits that you find attractive."
Farahany, who also directs the Institute for Genome Sciences and Policy, said
that on her fourth date with her husband, the two sat down over a glass of
wine and compared "23 and Me" genetic profiles so they could better
understand their compatibility at a microscopic level.
Making Babies
We're moving closer to the point at which people will be able to shop for
specific traits for their offspring—say, blonde hair or blue eyes, to get totally
eugenic on you.
Farahany seemed generally supportive of the idea on a lesser scale.
"People should be able to make a vast array of choices," she said. "It's unlikely
to lead to state-sponsored eugenics, because private choices by private
individuals are going to vary."
"It's not always the case that what some of us would think of as advancement
is what other communities would think of as advancement, whether it's height
or deafness," she added.
But others say we risk watering down the diversity of the human race. What
happens when everyone wants a little Tim Tebow or Steve Jobs?
At the Aspen conference, biotech expert Marcy Darnovsky said the more we
infuse science into baby-making, the closer we get to becoming a Gattaca-like
dystopia, in which an upper crust of genetically superior beings dominates a
vast underclass of "flawed" people whose parents couldn't afford the right
types of DNA tinkering.
As the sociologist Charis Thompson told Alexis Madrigal recently:
“You start out offering these prenatal screenings for certain conditions that
everybody agrees are very severe. It is not particularly eugenic, but about
alleviating the suffering of the child and the parents. But there is slippage. The
more you can test for and screen out, the more people do. And the example
this person gave was the high number of people who will abort a fetus that is
found to have an extra digit.”
With some genetic traits, though, we're already there: The number of live
births to children with Down syndrome is declining because 92 percent of all
women who receive a prenatal diagnosis of Down syndrome choose to abort.
In other words, we're no longer arguing about whether we design babies; we're
arguing over how specific those designs should be.
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