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Moral and Ethical
Issues in Genetics
Tijana Petković[1]
Draft paper
What are people ready to do to make their life
perfect?
Imagine that
you are planning of starting a family and doctor tells you that you have the
option to genetically enhance your child’s intelligence without risking the
life of the embryo. Whould you do it?
Or on the other case, genetic test reveals your
child has Down syndrome and they are offering the option to undo the genetic
manipulation. Would you do it? Are we talking about science fiction or reality?
Genetic research has advanced radically in the last
few decades, to the point where it has now become possible for us to attempt
therapeutic genetic modification. That possibility offers CRISPR/Cas-9 and
other related technologies. Scientists demonstrated that CRISPR/Cas-9 can edit
the genes of living human cells at a fraction of the time and cost required by
previous methods.
Think of editing the genome like a
“find-and-replace” function: a tool finds, removes, and replaces a specific
sequence of genetic material. In older methods of gene editing, imprecise
protein structures, which are laborious to construct, search for the specific
sequence. Instead, CRISPR uses RNA. The development of the CRISPR/Cas9
nucleases has meant that the pace of progress has increased exponentially. It
is predicted that in the next decade many genome editing-based clinical trials
will be developed by academics, biotechnology start-ups and pharmaceutical
companies.
Everyone thinks that curing monogenic diseases is
simple, but it’s not the case. As an
illustration of the complexity of what is being proposed in human gene editing,
there are approximately 3 billion (3,000,000,000) base pairs in the human
genome. There are approximately 3 million (3,000,000) letters in the text of
the Bible- so it would take almost 1,000 copies of the Bible to contain the
same number of letters as there are base pairs in the human genome. To achieve
the successful editing of a single base pair in the human genome would
therefore be equivalent to changing a single letter in one of 1,000 copies of
the Bible, and to do so at the sub- microscopic scale of DNA.[2]
Genome editing is indeed very
powerful when we consider that is is not only a method which potentionaly
provides a mechanism to modify single
nucleotides, but these technique is able to make more sophisticated genomic
changes, which could be used to cure more common diseases or to modify their course. Moreover, these
changes could be transmitted to all future generations. As such, genome editing
is potentially very powerful indeed.
We know that every human being is
created “in the image and likeness of God.” However the term “image” is to be
defined, it implies what theologians today call “being-in-communion.” The human
person is not an isolated entity but a member of a community. And the primary
and primordial community is that of the Church, the Body of the risen and
glorified Lord, Jesus Christ.
In order for us to reflect the perfection of the
Trinity, we cannot avoid engaging in an ongoing struggle against the tendencies
of our darker side, what the ascetic tradition calls the “passions.”
Accordingly, many of the Church Fathers will make a distinction between “image”
and “likeness,” defining “likeness” as the goal of that ascetic struggle, the
“unseen warfare” of the soul. Just as every human being is created in the
divine “image,” so every one is called to assume the divine “likeness.” The
image, in other words, refers to our nature, the “givenness” of human life that
we all share. The likeness, on the other hand, constitutes the goal toward
which each “person” or particular human being is called to strive. That goal is
described as “theosis.”[3]
Genetics is the study of heredity,
where a parent passes certain genes onto their children or offspring. Every
child inherits genes from both of their biological parents and these genes in
turn express specific traits. Some of these traits may be physical, for example
hair and eye color, skin color etc. On the other hand, some genes may also
carry the predisposition for certain diseases and disorders that may be passed
on from parents to their offspring. In addition, it is not only about the human
being, but also about variations in similar or related animals and plants.
If we are speaking about genetics,
we need to mention some basic elements for easier understanding.
Chromosome
is a structure that is thread-shaped, made up of DNA that occurs within the
cell nucleus as a microscopic unit. Chromosomes are usually in pairs and the
number is different from species to species. “For human beings it is normal to
have twenty-three pairs. One in each pair comes from each parent. Twenty-two
pairs are essentially alike in both males and females and are called
“autosomes”. The twenty-third pair determines sex and hence is distinguished in
the male (XY) and female (XX).“[4]
Gene is a segment of
DNA that we can find as a structural part of chromosomes and codes for the
production of the inherited traits and characteristics. Genes can determine
many things that are transmitted from parent to child, like the skeleton,
organs or mental chararacteristics. Genes are also in the pairs, and on single
chromosomes, we can find many genes. “It is estimated that as many as 30 000
genes exist in each human cell nucleus. If chromosomes are imagined as strings
of bread, then the genes would be the bread.”[5]
“An allele is one of two or more alternative
forms of a gene that occupy the same position on homologous chromosomes.”[6]
Genetic material has the
possibility to change. This is called mutation. A mutation can be the result of
a number of different causes, it can be inherited or maybe the product of
environment (radiation). Some anomalies are not only the result of a mutation
of genes, but a chromosomal defect. There are problems with extra chromosome,
that are responsible for the Down syndrome, or lack of autosome, where
individuals do not survive birth. There are also problems when a sex chromosome
is missing (Turner’s syndrome-XO), or an extra sex chromosome is present
(Klinefelter’s syndrome-XXY).
Homo Sapiens − whom Scripture
identifies with Adam, person created in the image of God, with possibilities to
attain the divine likeness today is almost replaced with Homo scientificus.[7]
This is the product of the new age. The things that humans could only dream
about and that we saw in science-fiction movies, today is a reality.
Genetic screening can be done on
the fetus, or on the parent(s) with different objectives in mind. If the
screening is done on the adults, the aim is to be sure regarding reproductive
decisions or to test on the late onset disease like Huntington’s disease. In
the care of fetus, parents are asking for it, because they can be uncertain
about continuing the pregnancy because of the risk of some genetic anomaly.
Genetic screening is not possible and not desirable for all. There must be some
suspicion.
There are four classes of individuals that are
usually identified as most at risk, prime candidates for genetic testing are
the following:
1.
“When a family history shows examples of a genetic defect in
successive generations, the present generation will surely need to be concerned
about its genetic inheritance.”[9]
2.
Second situation will be in a family where a previous
pregnancy produced a child with genetic disability.
3.
Third situation will be racial and ethnic groups among whom
particular genetic defects occur with some frequency.
4.
Fetal testing is recommended for chromosomal abnormalities
when a pregnant woman is over thirty-five.
Questions of ethical implication in
the context of genetics have also evolved around equality. This kind of genetic
screening is very expensive and it is not possible for everyone. The health care
gap is obvious in this case. People are also questioning the matter of invasion
of their privacy, as well as insurance companies will want to limit the risk.
The question regarding the suspected intention of “perfect” children has
increased. It is not only about prevention through abortion when genetic
deviation are known in, but also through personal wishes of parents who want
children with specific characteristics. It is not only a question about
screening, but also about engineering.
We are questioning what will happen
in future. What will happen to those children who “slip through whatever
genetic safety nets we construct”?[10] For many people
abortion is under consideration, when they find out that a genetic deviation is
known. According to statistics, 95% of
parents decide for abortion after they find out that the child will have the
Down's syndrome. We need to reconsider, how people with disabilities are
looking on this. They may understand themselves as a mistake,rather than as a
surplus, in the context of such decisions, which are necessarily complex and subjective discernment processes.
However, one can show with these examples how genetic testing and screening
interviews both personal and societal ethical dimensions. Therefore, a careful
public discourse needs to be led, in which the individual decisions are
respected and protected.
PGD - Preimplantation
Genetic Diagnosis[11]
Preimplantation genetic diagnosis is understood as
testing of embryos because of doubt on some genetic disease. Also, PGD is used
in the cases where they need compatible tissue for the family in the case of
sickness.[12] The process of PGD is very simple: one cell
is taken away from the embryo when embryo is in the eight-cell phase (that is
usually the third day of growth). DNK is analyzed from allocated cell in order
to determine the level of the risk of a genetic disease or extra genetic
material. In practice, the biggest number of embryos tested is conceived with
IVF. Then the couple can make a decision. They can choose which embryo they
will put into womb. This process is called PGD with embryonic selection.
The advantage of PGD is that it allows couples with
a high probability of serious genetic disease to have a child who will be
genetically theirs, but will not inherit the disease. Also, in the UK PGD is
most frequently used in order to select a particular gender, in order to avoid
diseases that are transmitted on the X chromosome and to check chromosomal
disorders. Cystic fibrosis is the most common disease that is tested by PGD.
PGD is inefficient with regard to
the characteristics that vary according to two or more genes, however, more
serious disorders with a single gene could be easily discovered, and thus
present the parents with the possibility of nonimplantation. PGD does not
involve modification of the human genetic material. The disadvantage of PGD is
that people are not paying attention to the treatment of the embryo, although
there is diagnosis, but only on their removal. It is alleged that the
implantation of such embryos into a woman increases the risk of miscarriage,
and thus after the diagnosis of steam requires to make judgments about life or
death of the embryo.[13]
In this way, a large number of
people are connecting PGD with a new
form of eugenics, as the number of people with genetic diseases in this way is
reduced. Organisations of people with disabilities are
particularly critical of PGD because of the lack of control of its application
in many countries. Many doctors explained that this method of establishing a
"perfect society" is the opposite of diversity in society who needs
to support persons with disabilities. The Ethics Committee of the American
Society for Reproductive Medicine concludes that PGD, which is used to check
the diseases that manifest themselves only in adulthood are ethically
justified, but it must be under the strict supervision of the Committee.[14]
When we talk about choosing gender
during PGD, it should be exclusively for medical purposes. This attitude of the
ethical committee of the American Society for Reproductive Medicine was
presented in 1994. However, since then, more and more people are interested in
IVF with no medical indication, but because of the possibility to choose
gender. The report from 1994 stated that we should discourage the selection of
embryos for a particular sex, because the launch of IVF with PGD for the only
reason ofchild sex selection has a higher risk of unjustified gender issues and
causes social harm and using medical terms for the wrong purposes. [15]
In May 2001, a new report was
published which says that, if it is determined that the cell sorting is safe
and effective; doctors should offer sex selection for couples. Couples should
be the ones who are fully informed about the risks and failures, and to confirm
that it will completely accept a child of the opposite sex, who were advised
about unrealistic expectations about the behavior of children of opposite
chosen sex and offered them to participate in research on conservation,
efficiency and demographics selection of the chosen gender.
Certainly,
we must set boundaries, in which cases the sex selection is allowed and where
it is not. Scientist Ewing argues that it is essential that medical ethics
should be based on the consistent ethic of the Church, which is staunchly
committed to protecting human life, claiming that regardless whether the child
is healthy or not, he/she has personality.[16] PGD is quite an
expensive process. Of course, the costs are not the only problem, but it is a
problem, because this way the diagnosis is only available to certain couples.
In the United States, about 9% of clinics allow choosing sex during PGD calling
it "family balancing". In these families, if a couple has more
children who are of the same sex, they would choose to have another pregnancy
only if they will be sure of the child's sex.
Manipulations of genetic material
of human beings had biological and social consequences that affect virtually
everyone. Genetic engineering involves manipulations of genetic material (DNA)
in the gametes or embryo for either therapeutic or eugenic purposes.[18]
Many questions have been raised in
the first years when genetic engineering appeared. People were curious what
kind of new life is possible to create in the laboratories and what
consequences will that have on the future generations? Is it legal to patent
living organisms? First experiments were on the animals, and then animal rights
advocacy tried to protect them. We have almost the same picture today.
Especially in the non-developing countries where there are no legal provisions
to protect them.
Therapeutic
Genetic Engineering
Scientists after testing for
genetic anomalies seek for possibilities to cure, and since the cause of the
defect is in the genetic material itself, the only solution is to replace or
rebuilt it. Today, we have possibilities for two ways of therapeutic genetic
engineering. Those ways are different because of the use of different types of
cells. The human organism has two kinds of cells: germ cells (reproductive
cells) or somatic (non-reproductive cells). Each normal somatic cell in the
nucleus contains 46 chromosomes (23 pairs). Germ cells contain 23 chromosomes,
so that the union of sperm and ovum produces a combination of 46 chromosomes.
Segments of DNA that determine the genetic code of inherited characteristic we
can find in every chromosome that comprises some 100 000 genes. If we want to
alter the genetic material of an organism, we need “recombinant DNA” (rDNA) or
directly through “transformation” or through “transduction” which is viral
transmission. [19]
In 1990 Dr Anderson started gene
therapy on a four-year-old child suffered from severe combined immunodeficiency
(SCID) by introducing into her blood stream other cells that contain a copy of
foreign (foren) gene. Dr Anderson first extracted T-cells from the child’s own
blood and exposed to a mouse-leukemia retrovirus. Retrovirus then acting as a
vector, invaded the T-cells and incorporated its genetic material, including
the missing gene. After that, followed the process of infusing reengineered T-cells back to the
child’s bloodstream, where the new gene began to produce the missing enzyme, so
that the immune system started to recover. Dr Anderson reported after few years
that the child now has a healthy normal life. This therapy lasted for years,
and the child needed to receive weekly injections of PEG-ADA, a drug that
provides missing enzymes. After two years of gene therapy, the doctors said
that the child does not need to receive therapy anymore, because reengineered
cells are now producing ADA enzyme.
Dr Anderson said that gene therapy had not produced
a cure, but claimed, “if you put a correct gene into enough cells patient, you
will correct the disease”.[20]
Today, any activity that involves therapeutic genetic engineering is
experimental.
The Orthodox Church in America in
2001 recognized the document entitled "Studies of embryonic stem cells in
the perspective of Orthodox Christianity," in which it explicitly exposed
the opinion of the Church. The document begins by explaining that the Orthodox
believes that human life begins at fertilization and that it is holy from the
beginning. [21]
Embryonic stem cells can be used for different purposes. On the one hand they
can help in the research of infertility or early pregnancy loss. They can also
be used in toxicological studies, regarding the effect of new drugs. The most
important potential of these cells is their use in transplantation medicine,
which can be used as a replacement cell therapy. In this way, it could help
people who suffer from diseases that until now could not be cured. Such as
diabetes, Parkinson's disease, multiple sclerosis, arthritis, stroke. [22]
The American government has allowed research on embryonic stem cells, but this
refers to the destroyed embryos that have no possibility of implantation. It
further encourages researchers to use adult stem cells to achieve the
therapeutic objectives set for embryonic stem cells. What is criticized in
relation with such research is mainly the exploitation of the situation by the
pharmaceutical industry and the doctors. The point is that these drugs, which
are also questionable, will not be able to be accessible to everyone, but only
to certain people who have the financial possibilities.
Due to the intrinsic uncertainty
about downstream effects, it is necessary to consider the precautionary
principle, which demands a justification before permitting any risk-creating
activity, with risk being defined both in terms of known hazards and unknown
possibilities. The latter is, by definition, incapable of measurement, leading
to the criticism that the precautionary principle can be stretched into a
generalized prohibition. In cases of known risks- such as devastating genetic
diseases- some might argue that any risks associated with gene editing
procedures are acceptable. To NOT use a God- given ability would, by this
argument, be wrong. At the same time, it must be admitted that it is impossible
to confidently predict ALL of the consequences of gene editing- whether of
introducing deleterious traits, or by losing unanticipated benefits to
retaining particular alleles (7).
Many see the act of choosing to intervene to edit
the genome as a usurpation of God’s role in mankind’s existence. While some see
choosing as ‘playing God’, others see it as ‘playing human’- exercising an
ability given to us by God, as God's agents, part of the stewardship
imputed to us. In this view, being such a partner
means taking an active role, and ‘artificiality’, far from being wrong or evil,
is rather a sign of humanity's constructive contribution, a sign of doing the
duty God has given. Furthermore, it is argued, humans can actively engage in
furthering the overall state of humanity by intervening in the works of nature,
when the goal is to achieve a natural good, such as health or fertility.
Eugenic Genetic engineering
When scientists are correcting genetic
anomalies, they are doing only one possible way of recombinant DNA technology.
There is also the opposite way, when scientists decide to modify the faulty
genetic material at concept. Alternatively, even further if there is no defect
at all. When this is happening, this can be called eugenic genetic engineering.
Here we can make a connection with PDG
for choosing sex. This is also a method
without medical indication, there is nothing to cure, but the couple wants to
know what sex will be their future child. They segregate X chromosome from Y.
An egg can be artificially fertilized to produce the desired sex. Also, when
the intervention has the aim to increase some desirable traits or characteristics
it is named as “enhancement genetic engineering”, where the creation of an
“improved” individual in a species or a new life form is termed “eugenic
genetic engineering”. [23]
Cloning involved in genetic manipulation and it’s development created
dramatically new dimensions to the discussion of the clinical applications of
genetic science and of artificial reproduction. The idea of cloning evolved in
history for some time, but it was hard to be implemented. The first famous case
that shook the whole planet was the case of sheep Dolly in 1997. There were
different theories on the best way for cloning, but DrWilmut who cloned Dolly
had a radically new idea. He called it procedure- somatic-cell nuclear transfer
technology. Scientist took the nucleus from the six-year-old sheep’s mammary
cell and inserted it into an egg from another adult sheep that he had
previously enucleated.[24]
Then they applied electrical charge that caused the pores of the egg and cell
to open, fusing the contents of two and they got an embryo. What may sound an
easy procedure was the result of more than 250 attempts before they made it.
There were many similar attempts, but what scared people was the idea of
cloning people. The same doctor that succeeded in the cloning of Dolly at the
end of the 20th century announced that he has the idea of cloning
human beings. For the start maybe not the whole human beings, but to clone
human embryos in order to withdraw them stem cells.
Stem
cells attract big attention of scientists, biologists and theologians. There
are a number of reasons. These cells have great potential for healing tissue,
so that is the reason why many researchers perceive stem cells as a cell of the
future. Also, they can replace defective cells. What is problematic and about
what they are debating is that the human embryonic stem cell hES cells derived
from human embryos before implantation. The UK is the first country that
enacted a law regulating the use of human embryos for stem cell research. [25]
Exploitation of stem cells to create chimeras-animals with tissues and organs
produced from human stem cells is not ethical. If this would constitute the
trend, it will come to a tragic devaluation of human life. Also, Holocaust is
universally accepted principle that human experimentation can not be conducted
without the permission of the subject. If we consider embryonic stem cells as
the beginning of life, how we can get approval?
The
main finding of the document that the Orthodox Church in America released is
the information that has been proven to be found in adult stem cells, and
bearing such great potential, can be said very similar potential with regard to
embryonic stem cells, and therefore it is absurd to use the embryonic stem
cells. It appeals to the believers not to do evil, citing the Apostle Paul:
"Why not say-as some
slanderously claim that we say-"Let us do evil that good may result"?
Their condemnation is just!" (Rom. 3:8)
Conclusion
The separation of therapeutic and non-therapeutic
intervention on the human body is very hard and demanding, especially if the
body is seen as a psycho-physical corpus. The body of Christ, which is the
Church, should be seen as a hermeneutical key of interpretation of the body and
because the characteristics of the Church can provide criteria for differentiation
allowing unauthorized forms of genetic intervention.
Huxley explored in his novel “Brave New World”, the
idea of applying genetic engineering beyond the area of corrective or
preventative medicine into changing human characteristics, such as engineering
a “master race” and a “slave race”.
If we want that genome editing
become a clinical reality, the implications for human enhancement would need to
be fully explored alongside the potentional for furthering social disparity.
The biggest problem and difficult task is to know where to draw a line from
treatment of illness to performance enhancement. If we can do something, does
that mean that we should do it? God given ability to reason and explore should
be used, as a talent. But, as a Christians, we also need to look wider and to
safe those who canot safe themselves, because they are too weak to speak for
themselves. Genome editing is seen by
many as representing a next step in our ability to analyse and alter the
genetics of plants and animals, including ourselves. The notion that knowledge
and the choices it offers might be our downfall is as old as the biblical tale
of the Garden of Eden. But, in equal measure, history demonstrates the enormous
benefits in health and happiness that come with responsible exercise of our
intellect and powers of invention. The newest developments in genome editing
will demand that we think again about how to balance hope and fear.[26]
[2] Discussion
paper by Dr. Murdo Macdonald, Church
of Scotland and member of the Thematic Reference Group on Bioethics, Moral and ethical issues in human gene
editing.
[3] John Breck, God with us: Critical Issues in Christian Life and Faith, St. Vladimir’s Seminary Press, 2003, 29.
[4]Richard J. Devine, Good care, painful choices: Medical Ethics For
Ordinary People, 3rd ed. (Paulist Press, 2004), 125.
[5] Devine, Good care, painful choices,
126.
[6]Ibid.
[7]John Breck, Lyn Breck,
Stages on Life’s Way: Orthodox Thinking on Bioethics (Crestwood,NY:
St.Vladimir’s Seminary Press,2005), 34.
[8] Tijana Petkovic, A Christian Perspective on
Genetic Manipulations,Astra Salvensis, Review of History and
Culture, IV, No. 7, 2016.
[10]Ibid, 151.
[11] Petkovic, A Christian Perspective.
[12] Australian
Government, National Health and Medical Research Council , “Ethical guidelines for the clinical practice of ART in Clinical
Practise and Research”, (June 2007),
55.
[13] Ivan Kešina,”
Preimplantacijska dijagnostika- u službi
selektivnog pobačaja prije trudnoće”, in: Crkva
u svetu 36 (2, 2001), 153-173.
[14] Ethics Committee of
the American Society for Reproductive Medicine, “Use of preimplantation genetic
diagnosis for serious adult onset conditions: a committee opinion”, in :Fertility and Sterility , (March 13
2013), vol.100, 54-57.
[15] Selena
Ewing, “Sex selection 'approved' by the American Society for Reproductive
Medicine”, in: Bioethics Research Notes,
13 (December 2001).
[16] Ibid.
[17] Petkovic, A Christian Perspective.
[18]Cf. John Breck, The
Sacred Gift Of Life: Orthodox Christianity and
Bioethics, (Crestwood,NY: St.Vladimir’s Seminary Press,July 2010), 190.
[19]Breck, The sacred gift
of life, 191.
[20] Devine, Good care,
painful choises,133.
[21] Orthodox Church in
America, “Embryonic Stem Cell Research in the Perspective of Orthodox
Christianity”, OCA Chancery NY,
(October 17, 2001).
[22] Guido de Wert,
Christine Mummery, “Human embryonic stem cells: research, ethics and
policy”,in: Oxford Journals, (Vol. 18, Issue 4), 672-682.
[24] Ibid.
[25]Cf. Guido de Wert,
Christine Mummery.
[26] Discussion
paper by Dr. Murdo Macdonald,
Church of Scotland and member of the Thematic
Reference Group on Bioethics,
Moral and ethical issues in human gene editing.
