BIOETHICS

TOPICS TESTED:
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Cloning
Stem Cells
Genetic Engineering
Artificial Intelligence and Designer Babies

GENETIC ENGINEERING
The Controversy: When does human intervention into the basic code of life go too far?
Is knowledge a benefit or a curse?
Intro:
Inside every cell thousands of genes control the characteristics that make each person
unique
As the understanding of genes has increased, scientists have also begun to understand
genes role in devastating diseases.
Early Research:
1953: James Watson and Francis Crick discovered the famous double-helix
structure of DNA
With Watson and Cricks discovery of the DNA sentence, scientists were able to
study the code of life
Testing Genes for Disease:
As knowledge of the human genome grew, doctors better understood the relationship
between disease and genes
In adults, most genetic testing is used to diagnose disease/identify the patient as a
carrier of the genetic disease
There are gene tests for >1300 diseases + many more in development
Doctors warn however that a positive test result for a disease caused by multiple genes
and factors does not guarantee a patient will get the disease
Result simply helps to assess a patients risk
POSITIVE IMPLICATIONS OF GENETIC TESTING:
1. Better understanding (INDIVIDUAL)
After testing +, patients have better understanding of risk of getting disease
Alter their diet and lifestyle to reduce other risk factors
More diligent about medical exams
Paying attention to warning symptoms
Undergo aggressive preventive treatment
CASE STUDY #1:
o Stephen and Caroline Monaco
Stephen developed life-threatening stomach virus when
he was 3
Caused severe brain damage

 Unknowingly, his parents were carriers of the disease and

had passed the gene to Stephen
Jana became pregnant, decided to test the fetus for the
disease
Fetus tested positive for IVA, which made it possible for
doctors to give baby Caroline medication at birth to
prevent the diseases devastating effects
9 year old Stephen is unable to walk, talk or feed himself
Vs 4 year old Caroline who is active and healthy
Genetic testing gave Caroline the future that Stephen
didnt get to have. Jana
CASE STUDY #2:
o Knowledge provided by genetic engineering is crucial
o Kim Wolfe saw her mother suffer through breast cancer
treatments
o Wolfe decided to test for a gene that dramatically raises the risk
of breast and ovarian cancer +
o Chose aggressive treatment before she showed any signs of
cancer
o Underwent surgery to have her breasts and ovaries removed
o Genetic testing is the most wonderful thing. You can look into a
crystal ball and almost see your future...and then do something
about it.
KNOWLEDGE GOOD OR BAD?
Genetic testing offers us profound insight. But it has to be balanced with
our ability to care for these patients. Stephen Gruber, University of
Michigan
CASE STUDY #1: SHANA MARTIN
Martin watched her mother batter Huntingtons, disease with no
current cure of treatment
Decided not to take a genetic test
I dont know how well Id handle a positive result, and with how happy
I am right now, that would just put a real shadow over my life, she
said.
Im much more comfortable with the unknown.
CASE STUDY #2:
Stephanie Vogt
Paternal grandfather and his 3 brothers all had Huntingtons
Went for genetic testing - +
Knowing what her future holds is not easy
Some days she is frightened
But most of the time, Im comfortable with the fact that I have the
knowledge.
PRIVACY CONCERNS
Worried that genetic test results can cause social embarrassment or
discrimination
Fear insurance companies will raise premiums or refuse to cover individuals
who test positive for expensive diseases
Knowing genetic test results, employers might not hire a candidate who will
have future health problems, costing the company time and money
Current employers worry their jobs might be at risk if employers learn they
have tested positive for a disease that will require time off and expensive
treatments

Case Study #1:

Victoria Grove used a home test kit to see if she was at risk for a
genetic form of emphysema (progressive lung disease that causes
shortness of breath and makes physical activity difficult)
Results positive decided against telling her doctor, fearing she would
not get health insurance
Something needs to be done so that you cannot get discriminated
against when you know about these things. Otherwise you are sicker,
your life is shorter and youre not doing what you need to protect
yourself.
1. Genetic discrimination:
Council for responsible genetics believes people should be cautious
about their genetic information
Documented at least 500 cases of genetic discrimination
Case Study: Heidi Williams
o Williams insurance company refused to cover her 2 children
after learning they carried a gene that put them at risk for
developing emphysema or liver disease
o They made me feel guilty for needing a parents peace of mind
in regard to my childrens future health. Many people are afraid
to come forward...because they are afraid of the retribution that
may not only be taken against them but could be taken against
their families as well.
2. Genetic Research:
Scientists complain discrimination fear prevents patients from
entering research studies
Were at tremendous crossroads. Genetic testing has the potential to
revolutionise the delivery of healthcare. But that wont happen if
people are afraid their genetic information will be used against them.
Susannah Baruch, senior policy analyst at John Hopkins University

Human Genome Project:

1990: international scientists undertook a massive project to better understand human
genes
2003: Human Genome Project mapped out the complete set of human DNA and
identified the genes contained
> 1400 diseases identified
Supporters believe that this knowledge would lead to better treatment of genetic
disease and illness
Ethical dilemmas:
Who would have access to personal information and how will it be used?
How does personal genetic information affect an individual and societys
perceptions of that individual?
Should testing be performed when there is no treatment available?
Should parents have the right to have their minor children tested for adult-onset
diseases?
Where is the line between medical treatment and enhancement?
Preimplantation Genetic Diagnosis
POSITIVE:
Preventing illness and disability
Screens out embryos with positive results
Tests for genetic mutations

Screen for abnormal chromosomes that may lead to miscarriage, chromosome

disorders such as Down Syndrome, genetic diseases such as cystic fibrosis
Or test for a tissue match with a sibling with a devastating disease, hoping the
resulting babys umbilical cord blood will provide life-saving cells to the older
child
NEGATIVE:
Take offense at labelling certain embryos undesirable
Its like children are admitted to a family only if they pass the test.
Its like, If you have the gene, we dont want you; if you have the potential to
develop cancer, you cant be in our family. Denise Toeckes, who has tested
positive for a breast cancer gene mutation
Despite its life saving promise, PGD is not infallible
o Helen Schirmer carried a genetic disorder Trisomy 22
o Active trisomy 22 causes mental retardation and severe physical
disabilities
o Although Schirmer did not have the active disorder, she had a one-in-three
chance of passing the damaged gene to her children, with a son more
likely to be affected
o 1997: pregnant, she and husband decided to have genetic testing
performed on the fetus
If the fetus had active form of trisomy 22, planned to terminate
pregnancy
Doctors reported test was negative and probably a girl
Continued pregnancy
Sep 97: gave birth to a son, Matthew who had active trisomy 22
genetic defect
6: could not speak, stand, crawl, feed himself or use the bathroom
Schirmers sued the doctors, hospital and scientists who performed
the genetic test
Claimed that if the doctors had done their jobs competently,
Matthew would never have been born
Discrimination against disabled
o Disability advocates fear that as more parents choose PGD to limit their
chances of having a disabled child
o Discrimination against the disable will increase
o Were trying to make a place for ourselves in society at a time where
science is trying to remove at least some of us. For me, its very scary.
Andrew Imparato, president of the American Association of People with
Disabilities
o BUT
Others believe that genetic difference, including disability, is what makes each
person unique
o Would I choose to have my child have a disability? No. Its difficult for
her. Its difficult for everyone. But difference is what makes the world go
round. Lisa Hedley, president of the Children of Difference Foundation
and mother of a child with dwarfism

Beyond Diagnosis Using gene therapy for treatment

With sciences expanding knowledge of the human genetic code,
research is moving beyond diagnosis and focusing on ways to use genes to treat,
prevent and cure disease
If scientists can identify defective genes, why not find a way to replace them with
healthy genes?

Somatic Gene Therapy attempts to treat a specific disease by replacing defective or

missing genes.
To deliver the normal DNA into a patients cells, scientists use viruses as the vehicle to
deliver the healthy genes.
NEGATIVE IMPACTS:
Changing the genetic code of future generations is morally wrong and too risky
Changing the code may trigger unexpected side effects in future generations.
CASE STUDY: BUBBLE BOY DISEASE
o 2000: French scientists reported a breakthrough in a study of infants with
bubble boy disease
o Injected modified cells back into the patients bone marrow
o Virus copied the new healthy genes in the patients
o Within 10 months, doctors declared their immune systems completely
normal
o Despite their success, unintended consequences arose 3 years later
o 3/10 of the infants developed leukemia and one died
o This confirmed a risk the gene therapy scientists had suspected
o When you consider the risk to the patient of the treatment, you must
also consider the risk to the patient of no treatment. grandmother of an
SCID patient
o You are in quandary now, because you have an ethical concern that you
may be creating a problem in these kids that they didnt have before. But
you have also given them a viable treatment. Paul Gelsinger, Jesses
father
FUTURE OF BIOETHICS: STEM CELL RESEARCH AND CLONING

Biotechnology continues to make new discoveries and push boundaries

The coming years will bring advances and new possibilities for scientists to find ways to
treat, cure and prevent disease
Some of the most exciting possibilities rest in the emerging research on stem cells and
cloning
While most knowledge is thereotical, scientists believe these fields will be keys to
curing patients with conditions like Parkinsons, cerebral palsy, and Alzheimers.
Despite bright possibilities, ethical controversy and debate exist.
Is there a point where the advancement of science damages the human race?

REPRODUCTIVE CLONING A HISTORY

Clone = group of cells or an organism like a plant, animal or human that forms from a
single cell of another organism
The clone and the cells source are genetically identical.
1993 movie Jurassic Park, scientists used the blood of extinct dinosaurs, captured in a
preserved mosquito, to clone new dinosaurs for a theme park
The science used in this movie seemed pure Hollywood magic until 1997, when a sheep
was introduced to the world

CASE STUDY: DOLLY THE SHEEP

First mammal to be cloned
Dolly was the exact DNA replica of the first ewe, from whose genetic material
she was created
Her birth occurred without the involvement of a male parent
Complex procedure called reproductive cloning
When news of Dolly raced around the world, a furious debate arose over
cloning.

CLONED ANIMALS
Since the birth of Dolly, prospect of cloning animals no longer science fiction
Agricultural shows: presence of cloned animals steadily increasing
Ability to clone prize dairy cows, steers and hogs
allow farmers to improve quality of entire herds
milk and meat from second- and third- generation cloned available to
enter food supply
consumer groups and some members of congress fought against the sale of food from
cloned animals
not enough research on effects of cloned food to declare it safe to eat
elevated risk of health problems early in life that some cloned animals develop
response from FDA:
o Jan 2008, FDA declared that:
o the risk assessment did not identify any unique risks for human food from
cattle, swine or goat clones, and concluded that there is sufficient
information to determine that food from cattle, swine and goat clones is as
safe to eat as that from their more conventionally bred counterparts.
HUMAN CLONING:
Positive:
1. Envisioned scenarios where cloning could give a dead child back to grieving parents
2. Cloning paired with designer genes could yield strong and smarter humans
Sports teams loaded with clones with the best players would be unbeatable
Negative:
1. Feared that future of manufacturing children was quickly approaching
Human cloning is banned
In reaction to the human cloning debate, ethics councils and legislatures
around the world condemned the use of cloning to produce a human child
2005: United Nations backed a worldwide ban on all forms of human cloning
o United Nations supports a ban on human cloning
o This declaration shows once and for all this is not all about the
religious right. A decent society doesnt build the foundations of its
biomedical science on the creation and destruction of human
embryos. William B. Hurlbut, a Stanford University ethicist who
served on President George W. Bushs Council on Bioethics
Many scientists around the world called for and supported these bans
o Reported safety issues in animal cloning
Resulted in failure
In embryos with severe abnormalities
Dolly the sheep showed the signs of premature aging
Eventually put to sleep at age 6, half the typical life span for a
sheep
o Unresolved safety and ethical issues most scientists have no
intention of making human clones
o Instead, they see possibilities in another type of cloning therapeutic

THERAPEUTIC CLONING:
In theory, both forms of cloning, reproductive and therapeutic, create a genetically
identical embryo

Therapeutic cloning = embryo not grown into a baby but instead used to harvest stem
cells

STEM CELL RESEARCH

Science has presented us with a hope called stem cell research, which may provide
our scientists with many answers that for so have been beyond our grasp. I just
dont see how we can turn our backs on this.
- Former First Lady, Nancy Reagan on the potential of stem cell to cure illnesses
Cases of right to life, right to die and right not to be kept alive...are complicated
with innovations in medical science and technologies which redefine the definition of
our commonly accepted concepts of life and death and transform the way we deal
with them.

Dame Elizabeth Butler-Sloss, Chancellor of the University of West England

Stems cells
Ability to renew themselves through cell division
Can become/differentiate into a range of specialised cell types
Scientists envision a future where they would be able to grow these stem cells
into other tissues and organs, which could then transplanted into patients
Endless Opportunities
Cloned brain cells could treat Parkinsons disease
New pancreatic cells would treat diabetes
Use of organs cloned from a patients own cells would eliminate the needless
deaths of people waiting on organ transplant lists
Organ rejection would no longer be a problem for transplant patients, eliminating
the need for a lifetime of expensive antirejection drugs
The bottom line is that for treatment of human disease, (cloning) is really the
closest to creating cures for disease, said Xiangzhong Yang, professor of animal
science and director of the Centre for Regenerative Biology at the University of
Connecticut

THE STEM CELL DEBATE:

Most people do not have a problem with growing new tissues and organs to save
human lives. The ethical debate arises, however, over the use of stem cells.
2 main types of stem cells: adult stem cells, embryonic stem cells
Adult stem cells, found in adult tissue, help to repair the body and replenish normal
turnover of blood and skin
Through bone marrow transplants, adult stem cells have been used successfully to
treat leukemia and other bone and blood cancers
no embryos are destroyed and donors knowingly give consent
no ethical problems with the use of adult stem cells in research and therapies
Embryonic stem cells:
Unique ability to become any one of the more than 200 cell types in the human
body (pluripotency)
Allows cells to develop into virtually any type of tissue or organ in the human
body

PROPOSITION

1. Scientific progress
The ability to produce embryo stem cells from cloned human embryos would
create entirely new opportunities to study inherited diseases, Ian Wilmut,
creator of Dolly the sheep
Embryonic stem cells hold the key to a greater understanding of disease and
developing new treatments
Studying stem cells may help scientists learn more about how they develop into
specialised cells and what errors happen during cell development to trigger
disease
Hope that one day stem cells will be used to make new cells and tissues to treat
disease
Patients with diabetes may be able to produce insulin after receiving healthy
insulin-producing stem cells
Cardiac patients could receive specialised cells that enable them to grow new
cardiac tissue to replace a damaged heart
Supporters believed that stem cell research brought hope to the millions of
people living with and dying of serious diseases
With the increase of in vitro fertilisation procedures at fertility clinics, many
embryos sat unused
For couples who finished building their families, these embryos would never
become babies
Instead of destroying or discarding them, the embryos could be used for stem cell
research
It makes sense to me that its a better moral decision to use human embryos to
help people than just throw them out. Its a very complex issue but to me it boils
down to that one thing. John Thomson
CASE STUDY: JAMES THOMSON

1998: JT 1st scientist to remove stem cells successfully from a human embryo
Process destroyed the embryo
I thought long and hard about whether I would do it
Decided to proceed because he believed the work was important to learning
why cell error occurred during development
August 2000 speech: Pres. Bill Clinton spoke about stem cells and his
commitment to funding more research
Weve had story after story...of the potential of stem cell research to deal with
these health challenges. And I think we cannot walk away from the potential to
save lives and improve lives, to help people literally get up and walk, to do all
kinds to things we could never have imagined, as long as we meet rigorous

OPPOSITION
Cannot condone the destruction of embryo
While they supported research to cure and treat serious diseases, doing so at the
expense of human life was not an option
Human embryos obtained in vitro are human beings and are subjects with rights;
their dignity and right to life must be respected from the first moment of their
existence
-

Pope John Paul II, describing the Catholic Churchs opposition to stem cell
research

It does not follow the theology of a few should be allowed to forestall the health and

THE FUTURE OF STEM CELLS:

Long road for stem cell research and therapies
Many scientists believe effective stem cell therapies are still years away from
human trials
The more immediate use for stem cells may be for researching and understanding
disease
The knowledge could develop more conventional medicines and therapies
As stem cell research moves into the future, the ethical debate will continue
With each discovery, researchers will attempt to balance the sanctity of life with the
hope of a cure for millions of seriously ill people.
ESSAY
INTRODUCTION:
Many debates about biomedical ethics are also debates about the definition of human
life when it starts and when it stops
Medical procedures performed on the human body between those 2 points are closely
scrutinised because human life is valued so highly.
Any scientific or medical procedure that interferes with the growth of a human embryo
(a fertilised ovum) is subject to debate about when human life begins.
For example, stem cell research intervene by halting further growth of an embryo or
fetus
In contrast, cloning intervenes by doubling the growth of an embryo
Depending on when a person believes the actual beginning of life takes place in this
process, certain medical procedures will be viewed either as ethical or unethical.
Religions, philosophies, and value systems profess different ideas about when human
life begins and ends.
These issues under contention in contemporary medical and scientific research and
practices continue the process of defining and redefining human life.
Preface:
Research on stem cells concerns itself with finding out how an organism develops from
a single cell.
It also seeks to discover how healthy cells replace damaged cells in adult organisms
Knowledge about these areas can help scientists develop cell-based therapies, often
referred to as regenerative or reparative treatment, that can battle disease and heal
people in ways that were thought to be impossible
However, since extracting stem cells in embryos ends the further development of the
embryo, those who believe that embryos are human life find the cost of stem cell
research to be too steep.
The first human embryos used in the University of Wisconsin experiments were
produced in a laboratory to help couples who had been unable to conceive babies.
Several couples who were able to complete in vitro fertilisation with some of their
embryos gave their consent to donate the left-over embryos to science.
How scientists obtain human embryos in order to study stem cells remain a major point
of contention in ethical debates.
Some people fear that the demand for embryos may encourage laboratories to grow
them for the sole purpose of research, in effect producing embryos with the knowledge
that they will be killed in the process

VIEWPOINT 1: EMBRYONIC STEM CELL RESEARCH IS UNETHICAL

The human embryo...is not to be destroyed or seen as disposable tissue that can be used in
research Thomas A. Shannon, professor of religion and social ethics
He advances the religious argument that using embryonic stem cells in scientific research,
even cells extracted from already destroyed human embryos, is ethically and morally
unacceptable.
Intro:
Over the last 2 decades, scientific developments have been proceeding at a rapid pace.
Nowhere has this been more true than in human genetics
One cannot pick up the daily paper or listen to a news show without hearing yet
another new discovery, development or application of a new procedure.
President George W. Bush Bush characterised embryonic stem cell research as the
taking of an innocent life and asserted that each embryo is a unique human life with
inherent dignity and matchless value
ETHICAL:
If human embryos are entitled to the full protection of our moral norms and the use of
such embryos in research is equivalent to murder, then opposition to such research is
understandable. However, we should not simply assume, without benefit of a wellreasoned and persuasive argument, that our moral norms and principles apply to
embryos.
The view that the use of embryos in research is inconsistent with accepted scientific
evidence, in particular evidence regarding embryonic development and is not
supported by a coherent moral theory. Given the immense benefits that we might
derive from embryonic stem cell research, including the development of therapies that
could ameliorate or eliminate many debilitating and disabling illnesses and injuries, not
only is government funding or such research permissible, but governemt support of
such research furthers critical interests of our society and is of paramount importance
Moral Benefits of Embryonic Stem Cell Research:
The intense interest in stem cell research reflects the potential for developing
important, indeed revolutionary, therapies as a result of this research
If stem cells can be reliably directed to differentiate into specific cell types, there
is a possibility of developing replacement tissues for millions of people who
suffer from debilitating diseases and disabilities, including Parkinsons and
Alzheimers disease, diabetes, heart disease, liver disease and spinal cord injury,
to name just a few
Although there is no certainty that such therapies could be developed, the
research to date appears promising
For example, dopamine-producing neurons generated from mouse embryonic
stem cells have proved functional in animals, thus indicating there is a realistic
possibility that similar results could be reproduced in humans, with beneficial
consequences to those suffering from Parkinsons.
Researchers at John Hopkins University: able to use neurons derived from
embryonic stem cells to restore motor function in paralysed rats
The moral imperative to pursue research with such potentially beneficial
consequences seem clear
Alleviation of suffering and restoration of health are important goals even if only
one individual is benefited.
If millions of individuals may be benefited, stem cell research assumes critical
importance and warrants substantial support from federal funding
Michael J. Sandel: Embryo is to Human as Acorn is To Tree

 There are some who believe that embryos deserve the full range of rights
provided to human persons and that removing from an embryo that possibility of
developing the capacities and properties characteristic of human persons is
morally equivalent to killing an adult human
Those who hold this view maintain that we should not harm embryos by
utilising them in stem cell research, just as we do not kill adult humans for
research purposes
An essential premise of this position is that even though the embryo does not
fully possess the capacities and properties of human persons, it possesses the
potential to develop these capacities and properties and this potential is
sufficient to provide it with the moral status of a human person
On this view, an embryo is merely a human person at an early stage of
development. Another essential premise of this position but one that is not
always acknowledged- is that the embryo is already an individual. A necessary
condition for possessing moral rights is individual identity
We do not grant moral rights to moral rights to mere groupings of cells, even if
they are genetically unique.
The potential of the embryo does not make it a human person. The fact that the
early embryo is not an individual has obvious implications for the argument that
the embryo is entitled to protection because it possesses the potential to
develop capacities and properties characteristic of human persons. It cannot
refer meaningfully to the potential of the embryo if it is not yet an individual
The possibility that an embryo might develop into a human person does not
obviate the fact that it has not yet acquired the capacities and properties of a
person
Not only do embryos lack consciousness and awareness, but they do not have
experiences of any kind, even of the most rudimentary sort. They have not even
undergone cell differentiation
Those who oppose embryonic research often try to minimise the gap between
potential and actual possession of the characteristics of a human person by
suggesting that an embryos path of development is inevitable
They assert that the embryo has the same genetic composition as the human
person it will become and these genes provide it with the intrinsic capability of
developing into that human person. But this suggestion overlooks the important
role that extrinsic conditions play in embryonic and fetal development. Those
who claim full moral status for the embryo seem to regard gestation within a
womans uterus as an inconsequential and incidental detail. Obviously, it is not.
The embryo must be provided with the appropriate conditions for development
to occur. The embryo does not have the capability of expressing its potential
on its own .
The conclusion that all cells in a persons body possess the same moral rights as
the person itself is just one of the unacceptable conclusions that follow from
granting embryos the status of human persons. These unacceptable
consequences demonstrate that granting full moral status to the embryo is not
compatible with widely accepted moral norms and priniciples.