Suppl. No. 1, 1an.

2006 48
Correspondence: Bagher Larijani, Endocrinology and Metabolism Research Center, Shariati Hospital, North Kargar
Ave., Tehran, Iran, Email. emrcsina.tums.ac.ir
MEDICAL GENETIC ETHICS, ISLAMIC VIEWS AND
CONSIDERATIONS IN IRAN
1
FARZANEH ZAHEDI,
2
BAGHER LARIJANI
1
Endocrinology and Metabolism Research Center,
2
Medical Ethics and History oI Medicine Research
Center, Endocrinology and Metabolism Research Center, Tehran University oI Medical Sciences, Tehran,
Iran.
ABSTRACT
The rapid progress oI science and technology, including genetic research and technology has been led
to new hopes in the treatment oI some genetic conditions and diseases. But these developments have
also raised ethical and societal concerns in diIIerent communities. Certainly, medical genetics
knowledge should be applied so, we have to maximize its beneIits and minimize any harm. In recent
decades, many attempts have been perIormed by scientists, ethicists, jurisprudents and lawyers Ior
compiling international and national guidelines Ior regulation and legislation in this Iield.
For compilation oI this article, we searched some comprehensive electronic databases and some valid
English and Farsi books and journals. In this intensive review, we intend to provide a basic knowledge
about genetic ethics Ior health care proIessionals in order to Iacilitate their decision-making in clinical
practice.
There are various ethical issues related to medical genetics that we reviewed in this paper in brieI.
These key issues do need attention and urgent resolution universally. We also reviewed Islamic view
oI points in this regards and Iinally we addressed the status oI genetic ethics in our country, containing
new national guidelines in this Iield.
Keywords: Medical ethics, Medical genetic, Genetic ethics, Islam, Iran
INTRODUCTION
The ever-increasing progress in science and
technology has been accompanied by a parallel
success in biotechnology and medical genetics. The
rapid advances in genetic research and technology
over the last Iew decades have provided the genetic
testing tools Ior a number oI disorders and have led
to new hopes in the treatment oI some genetic
conditions and diseases. Indeed, these
developments have also raised ethical and societal
concerns about how emerging technologies will be
implemented, and how their implementation will
impact diIIerent communities. Ethical values and
social concerns must help us to know how medical
genetics knowledge will be applied so that we
could maximize the beneIits and minimize any
harm. In recent decades, many attempts have been
perIormed by scientists, ethicists, jurisprudents and
lawyers Ior compiling international and national
guidelines Ior regulation and legislation in this
Iield. Genetic testing is subject to a wide range oI
national and international guidelines,
recommendations, declarations, reports and
regulations (1). In this way, the Universal
Declaration on the Human Genome and Human
Rights (1997), and the International Declaration on
Human Genetic Data (2003) have been compiled
by United Nations Educational, ScientiIic and
Cultural Organization (UNESCO) (2, 3). World
Health Organization has also addressed this issue
in recent decade (4-8). Regional oIIice Ior the
Eastern Mediterranean oI World Health
Organization (WHO) in 26th meeting oI Regional
Consultative Committee (RCC) in 2002 discussed
ethical issues related to gene manipulation and its
eIIects on health care delivery (7). Moreover,
diIIerent countries have written and conducted
some national regulations (9-13). The social values
and norms oI diIIerent cultural environments
necessitate the need Ior development oI ethical
standards and codes.
METHODS
In this paper we aimed to review main issues oI
medical genetic ethics and discuss Islamic jurists'
opinions about its critical debates. We will also
intend to state the situation oI genetic ethics in
Iran. For compilation oI the article, we obtained the
data by means oI searching through computerized
databases in PubMed, IranMedex, and Ovid
sources using keywords such as genetic ethics,
genetic test, gene therapy, etc in combination with
Islam and Iran. Then we supplemented our
searches via checking the reIerence lists oI the
papers and searching relevant journals. We also
reIerred to some valid English and Farsi books.
This intensive review is aimed at providing health
care proIessionals a basic knowledge about the
main issues in medical genetic ethics in order to
Medical Genetic Ethics, Islamic views and Considerations in Iran 49
Iacilitate making their decision within clinical
practice.
Main Ethical Issues
There are various issues related to medical genetics
which can be related to genetic inIormation merely;
or to genetic manipulations or therapies. Some
critical ethical challenges arising in medical
genetics are listed in Table 1. These key issues
would need necessary global attention and urgent
resolution.
Pre-Natal Diagnosis (PND) and Pre-Implantation
Genetic Diagnosis (PGD) are predictive
presymptomatic testing to establish Ietus's genetic
predisposition to a particular disease. Families who
are likely to have a child with genetic conditions
such as Down syndrome or spina biIida can proIit
Irom antenatal genetic screening. There are several
aspects oI genetic testing that may lead to ethical
dilemmas (14). Serious psychological damage,
stigmatization in social liIe, discrimination in
employment, liIe and health insurance are some
risks oI genetic testing. Genetic labeling could be a
signiIicant Iorm oI morbidity. However,
advantages oI antenatal screening consist oI a
reduction in births oI children with burdensome
conditions, reduced risks to mothers, reduced
public costs oI care, and our greater Ireedom oI
choice. Prenatal genetic screening is commonly
used to identiIy high risk pregnancies regarding
birth deIects, such as neural tube deIects and
genetic conditions like "Down syndrome" (14).
However, Ior some hereditary disorders, PND
remains controversial, particularly when the
diagnosis leads to a decision oI pregnancy
termination Ior a disease that, unlike Tay-Sachs
disease, is not deIinitely an untreatable, Iatal
disease oI inIancy (15). Abortion in genetic
disorders oI Ietus is a critical debate in genetic
testing.
Another growing clinical application oI genetic
testing is the identiIication oI genetic
predisposition to disease in order to guide early
intervention and preventive care. This type oI
genetic testing is another Iield in which ethical
dilemmas Irequently arise. In some disorders (such
as Huntington disease, breast or ovarian cancer),
existence oI a mutant allele may cause a disabling
disease later in liIe, but testing Ior some conditions
Ior which there are no treatments have the potential
to cause psychological harm, stigmatization, and
discrimination. Genetic testing Ior Huntington`s
disease (a progressive motor and cognitive disorder
with onset in midliIe) is one example (14).
Although identiIying carriers could have beneIits
but potential harms could arise Irom testing.
InIormed consent Ior testing, privacy oI personal
genetic inIormation, and providing consultation
and treatment Iacilities are important headings oI
ethical issues.
Considering these issues, International Declaration
on Human Genetic Data has deIined accepted
purposes oI genetic testing (3). According to the
declaration, human genetic data and human
proteomic data may be collected, processed, used
and stored only Ior the purposes oI: (i) diagnosis
and health care, including screening and predictive
testing; (ii) medical and other scientiIic research,
including epidemiological, especially population-
based genetic studies, as well as anthropological or
archaeological studies, collectively reIerred to
hereinaIter as 'medical and scientiIic research;
(iii) Iorensic medicine and civil, criminal and other
legal proceedings, taking into account the
provisions oI Article 1(c); (iv) or any other purpose
consistent with the Universal Declaration on the
Human Genome and Human Rights and the
international law oI human rights (3, Article 5 ).
In recent years, interest in application oI genetic
data in workplace by employers or insurance
companies to identiIy genetically prone employees
has been increased. These measures have led to
major concerns by the public and some legislators
in some countries (16). Several states in the USA
have passed genetic privacy and genetic
antidiscrimination laws (16).
A debate is ongoing in diIIerent communities on
"designer babies" or "transgenic man". Prenatal
selection Ior some desirable alleles and genes Ior
complex traits (such as personality, intelligence,
and physical characteristics) and sex selection have
arose considerable discussions worldwide.
Although sex selection Ior reduction oI the risk oI
sex-limited or x-linked diseases is justiIiable, there
are serious ethical and social debates about sex
selection only Ior parent's request based on socio-
cultural tents or economic reasons, such as one sex
superiority over other.
Additional problems may arise Irom genetic
screening programs. The ultimate objective oI
genetic screening is to improve the public health
but there may also be unintended negative
consequences. Disregarding oI standards oI
inIormed consent, risk oI overt or implied
compulsion, and contingency oI unauthorized
access to samples or data are some ethical issues
which require appropriate attentions and
supervisions (15).
In medical genetic ethics, a great deal oI
importance is placed on the individual inIormed
consent. Human genetic data have a special status
on account oI their sensitive nature since they can
be predictive oI genetic predispositions concerning
individuals and the power oI predictability can be
stronger than assessed at the time oI deriving the
data; they may have a signiIicant impact on the
F. Zahedi 50
Iamily, including oIIspring, extending over
generations, and in some instances on the whole
group; they may contain inIormation that its
signiIicance is not necessarily known at the time oI
the collection oI biological samples; and they may
have cultural signiIicance Ior people or groups (3).
Privacy oI genetic inIormation is a central ethical
principle in medical genetics. International
declarations endeavor to protect the privacy oI
individuals and the conIidentiality oI human
genetic data linked to an identiIiable person,
Iamily, or an ethnic group (2,3). Most ethicists
agree that, while conIidentiality is important, there
are situations in which conIidentiality can be
broken. The most common example involves a
duty to warn; e.g., a pilot at high genetic risk oI
heart Iailure.
Genetic engineering has been the inspiration Ior
exciting science Iiction Ior many years. Since
genetic engineering is regarded as having the
potential to manipulate human nature itselI; it
encapsulates people`s Iears regarding Iuture abuses
oI science (17). Main genetic engineering issues
consist oI gene therapy (somatic cell and germ
cell), eugenics, stem cell research and cloning, pre-
implantative intervention and selective abortion.
There are signiIicant ethical issues in the Iield oI
somatic cell manipulation such as the need to
balance any potential beneIits and harms, the saIety
and eIIectiveness, selection oI subjects, inIormed
consent, and protection oI privacy and
conIidentiality. Germ line manipulation is a serious
controversy worldwide. Gene therapy that involves
human germ line cells is not ethically acceptable
by most ethicists and is not permitted by existing
oIIicial guidelines.
Eugenics involves improving the gene pool by
elimination oI deIective genes, and improving
attributes such as intelligence and personality.
There are historical unethical experiments such as
involuntary sterilization in USA (18) in order to
breed a 'superior race in the Iirst halI oI the 20th
century. Currently, eugenic genetic engineering Ior
selection against personality, character, Iormation
oI body organs, Iertility, intelligence and physical,
mental and emotional characteristics is prohibited
in almost all countries. An area oI interest is the
realm oI transgenics Ior the purposes oI treatment.
The most common use oI transgenic technology is
in xenotransplantation (19).
Stem cell research and cloning are two subjects
that have raised a series oI ethical and public-
policy questions that are now being conIronted by
multiple international organizations, nations,
cultures, and religious traditions. Key ethical issues
Iacing in these Iields consist oI human dignity and
moral status oI human embryo, time oI beginning
oI liIe, the destruction oI pre-implantation
blastocysts, slippery slope oI dehumanizing
practices, justice and resource allocation (20).
There are substantial debates regarding the speciIic
stage that dignity is conIerred in development
(conception, primitive streak development,
implantation, ensoulment, or birth).
There are various challenges about genetic tissue
banking that are likely to come Irom the complex
organizational, social, political, and ethical aspects
oI this subject. Concerns about subjects' rights,
inIormed consent, privacy, and ownership oI
genetic material require attention in the
development oI DNA banks (21). Adequate
anonymization, consent and protection oI the
samples must be considered in research banks (19).
Questions also arise about patenting oI liIe Iorms,
genes and various other human proteins (16).
Ownership oI DNA and patenting has been issued
in the world Ior genes and gene sequences since
bringing up Human Gene Project (HGP). This
issue and related ethical challenges is also
discussed by World Health Organization recently
(8). Other societal concerns about medical genetics
include Iairness in the use oI genetic inIormation,
reproductive decisions and reproductive rights,
conceptual and philosophical implications, saIety
and environmental issues, and the
commercialization oI products including property
rights and accessibility oI data and materials (22).
There are also other questions related to social
implications in choices Ior marriage partners (23)
and assisted reproduction techniques.
Islamic Perspective
There is no conIlict between science and religion
Iaith in Islam. Also, the perIormance oI research on
human subjects is Islamically acceptable, a
researcher should comply with the Iramework oI
Islamic law in any research that he/she undertakes
(24). The incidence oI genetic diseases in the
Islamic world is high because oI social and other
Iactors that promote consanguinity (25).
ThereIore, genetic services should be made a
component oI public health care systems. Muslim
religious scholars, research scientists and policy
makers should collectively and continually ponder
over these questions and take steps to eIIectively
deal with the situation (23,26). It is duty oI Muslim
ethicists and jurists to analyze new modern issues
oI medicine and biotechnology and inIorm
Muslims about the religious and ethical approaches
regarding such issues. Some ethical issues
associated with medical genetics have been dealt in
some details by Muslim jurists oI the sunni and
shi'a schools.
Since Islam calls attention to pain alleviating and
disorder healing, there is no serious ethical debate
against therapeutic strategies applied Ior
Medical Genetic Ethics, Islamic views and Considerations in Iran 51
prevention, delaying onset, or carrying out
appropriate care Ior genetic disorders (25). Genetic
testing is not prohibited in Islam, and so prenatal
and presymptomatic testing are acceptable iI the
aim oI them would be prevention, delaying onset oI
diseases, improvement oI qulity oI liIe, or diseases
treatment. Genetic screening Ior detection oI
genetic abnormalities and possible cure oI birth
deIects, and so genetic counseling would be
acceptable (27,28).
In Islamic communities some components oI
genetic counseling and testing are sensitive points
and the transIer Irom one social context to another
needs careIul consideration (25). For example;
prenatal testing is Iaced with some limitations,
although it is allowed in Islam (25). Although
therapeutic abortion would be permitted beIore 120
days counted Irom conception under special
circumstances (29,30) elective abortion is generally
unacceptable (30,31).
Gene therapy should be used solely Ior therapeutic
purposes (32) and it should not be used to promote
destructive purposes. Somatic gene therapy and
replacement oI deIective genes is acceptable Irom
viewpoint oI Islamic jurisprudence (27) but germ
line gene therapy is prohibited. It has potential oI
altering the genetic make up and other
consequences Ior the next generations, and there is
enough knowledge about its complications and
risks (7). Meanwhile, based on opinion oI most
Muslim jurists, gene therapy that has eIIect on the
Iuture progeny is impermissible (33).
Gene manipulation other than therapeutic
approaches is not allowed in Islam. Hence,
eugenics and dysgenics could not be perIormed in
human according to majority oI Muslim jurists
opinions. (27,32). However some jurists permitted
human Ietus gene manipulation Ior skin color
change, intelligence improvement and etc in
current years (30). Surgeries to treat congenital or
acquired deIormities to restore normal shape or
Iunction oI an organ are also permissible (33). Sex
selection is not acceptable except Ior medical
reasons in gender related diseases. Islam teaches
contented with the will oI God (27). Similarly,
Islam is not in agreement with 'designer babies' or
'transgenic man'. The issue oI 'plying God' and
altering creation through gene therapy, particularly
Ior cosmetic reason, and unnecessary changes in
appearance has been considered in some "Fatwas".
The majority oI Muslim jurists have permitted this
iI an abnormality accompanied with physical or
psychological harms. Human equity despite
diIIerences in race, color, gender, and other
physical characteristics is emphasized in Islamic
teachings. We would read in Holy Qur`an that:
"Oh mankind' We created vou from a single (pair)
of a male and a female, and made vou into nations
and tribes, that vou mav know each other (Not that
vou mav despise each other), 49/13".
The Islamic Figh Academy (IFA), a subsidiary
organ oI the Organization oI the Islamic
ConIerence (OIC) aIIiliated to the world Muslim
league (WML) addressed the ethical guidelines oI
genetic engineering in its 15th session in 1998.
Based on recommendations oI the OIC, it is
categorically prohibited to use genetic engineering
to attain evil aims or to reach prohibited means
(33).
The use oI genetic engineering in agriculture and
animal breeding under necessary precautions are
permitted (30). However, producing Genetically
Engineered Micro-organisms, Ioods and transgenic
animals or plants could be permitted and perIormed
Irom Islamic perspective (30). In plants and
animals' gene manipulation, environmental risks
must be considered and eliminated (30). Genetic
changes and related experiments in animals are
permitted in Islam but additional harms and torture
must be avoided (30).
According to inevitable consequences oI human
reproductive cloning, it is prohibited due to
majority oI Muslim reIerence decrees (34). Stem
cell research and cloning Ior therapeutic purposes
is permissible (27,30,35-37) with Iull consideration
and all possible precautions in pre-ensoulment
stages oI Ietus development (34, 38).
Medical Genetics Ethics in Iran
Iran, a large country with a population oI 67
million, represents a highly heterogeneous gene
pool and mutation spectrum due to the
geographical, cultural and ethnical diversity (39).
Iran is a member oI Genetic Research Network
established in Eastern Mediterranean Region in
2004 (40,41). The number oI centers Ior genetic
research in Iran has been increased in recent years
and an emphasis on ethics has been voiced by
medical and religious authorities (42-49).
Compilation oI a strategic plan Ior medical ethics
activities carried out in 2002 by the Research and
Technology Deputy oI Ministry oI Health and
Medical Education (43). Currently, National and
Regional Ethical Committees in universities and
research centres supervise genetics and other
medical researches Ior protection oI human
subjects. Any discussion oI ethical issues needs to
take place within a Iramework which incorporates
the principles oI justice, autonomy, beneIicence
and non-maleIicence (22); despite the Iact that
Iran, as an Islamic country, has own interpretations
about these principles that we would explain in
other article. In two studies (50, 51), Dr. Farhud et
al. have investigated the point oI views oI
physicians, nurses, midwives and medical students
about principles oI medical genetics. They
F. Zahedi 52
concluded that there is highest agreements on the
principle oI proportionality (8891), beneIicence
(7589), Iollowed by autonomy (7280) and
justice (7083) (50). BeneIicence, according to
the views, was the main look out Ior making
decision (51).
Currently there is no absolute restriction on genetic
research in Iran, however moral principles and
ethical codes must be completely Iollowed. The
'National Ethical Guidelines of Medical
Research, including genetics research has been
compiled recently. Based on the guideline, genetic
researches are permissible only iI their purposes
would be:
1. To diagnose, classiIy or screen genetic
diseases
2. To deIine genetic predisposing Iactor oI a
disease beIore it appears, iI there is an eIIicient
way to prevent or reduce the complications.
3. To provide consultation Ior couples about
genetic risk Iactors oI their oIIspring.
4. To alleviate, prevent or cure diseases and
not Ior eugenics
5. Forensic medicine
6. Population based genetic research regarding
scientiIic and ethical principles
According to the guideline, prenatal diagnosis is
permissible only iI it is concerned with mother or
Ietus health. It should be mentioned Ior parents that
prenatal diagnosis does not guarantee the 'health oI
baby. The probable risk Ior mother and Ietus
should be described Ior parents.
Eugenic researches are not permissible based on
the national guideline and sex selection is allowed
only in X-linked disorders. Human reproductive
cloning is also prohibited. Stem cell research is
permissible to obtain embryonic and adult stem
cells, regarding scientiIic and ethical principles.
But researches on residual embryos could be
conducted only aIter parent`s consent.
Iran's Muslim shi'a religious leaders have issued
decrees authorizing animal cloning but banning
human reproductive cloning. Consequently, Iranian
researchers oI Royan Institute reported the
derivation oI a new embryonic stem cell line
(Royan H1) Irom a human blastocyst two years
ago(52). In addition, Iran hopes to celebrate the
birth oI cloned sheep in the near Iuture (53).
Abortion is a main debate in the subject oI prenatal
genetic testing. There are many diIIerent cultural
perspectives about therapeutic abortion and the
time that human liIe begins. ThereIore, there isn't
universal agreement on the issue oI pregnancy
termination Iollowing prenatal diagnosis. The
parliament oI the Islamic Republic oI Iran
approved a new act on abortion "21 June 2005"
(54). Previously, religious scholars had been
allowed abortion in untreatable and genetic
disorders with 3 criteria; deIinite diagnosis, beIore
4 months oI gestation, and unusual problems Ior
Iamily. Under the new law, a pregnancy can be
terminated within the Iirst Iour months oI
pregnancy iI the Ietus is mentally or physically
handicapped, or where the mother's liIe is likely to
be in danger (54). Three specialists must conIirm
the problem. Legal Medicine Organization has
deIined 51 Ietal and maternal disorders, including
some genetic disorders that could be considered in
this act. Twenty-nine indications are Ietal
abnormalities and disorders such as Osteogenesis
ImperIecta, Osteochondrodysplasia, Osteopetrosis
InIantile, Alpha-thalasemia, Trisomy oI
chromosomes 3,8,13,16,18, etc.
CONCLUSION AND RECOMMENDATION
Cultural diIIerences in various countries and ethnic
populations should be considered and reIlected in
the recruitment, and in the structuring and
comprehension oI the genetic ethics rules. Ethics
education Ior scientists and general population are
essential Ior better mutual understanding oI ethical
challenges in the society. General health care
providers currently do not have expertise in clinical
genetics or in molecular genetic testing.
Widespread education Ior health proIessionals in
genetics, risk assessment and behavior change is
needed across the globe (55). Clinicians must be
involved in considering ethical questions
associated with any genetic tests. Addressing these
questions require a continuing dialog and
cooperation between physicians, researchers,
religious scholars in our country and within other
Islamic countries.
According to International Declarations on medical
genetics, compiling culturally-adopted national
guidelines, as a necessary action, should be
Iollowed by scientists, ethicists, jurisprudents and
lawyers in all countries oI the region.
Establishment oI a national well-controlled system
and appropriate ethical and scientiIic supervision
oI medical genetics programs in each country
should be enhanced to make sure that the advances
in human genetic knowledge and technology are
used responsibly, Iairly, and humanely. More
distinct supervision is necessary Ior non-
therapeutic genetic screening.
Considerable attention should be paid to justice in
distribution oI genetic advances` beneIits and in
resource allocation at national and international
level. Regarding our mutual believes and ethical
values, the necessity oI strenghthening the
"Regional Genetic Network" including an ethical
conduct should be considered.
As it stated previously the public also needs to
become more acquainted with genetic tests.
Improvements in public awareness will alleviate
Medical Genetic Ethics, Islamic views and Considerations in Iran 53
some oI the extensive pre-test education needs that
exist currently (55).
With the increasing number oI identiIied genes
causing diseases and the existence oI genetic
variation between diIIerent populations in the
world, establishment oI population- speciIic DNA
banks could provide valuable sources oI
inIormation and sample Ior medical genetic
research in the Iield oI diagnosis, prevention and
hopeIully cure oI hereditary diseases world-wide,
though the ethical values in this Iield must be
precisely respected.
ACKNOWLEDGEMENT
We would like to thank Dr. Eghbal Taheri Ior her
valuable comments. We also wish to thank Dr.
Elaheh Motevaseli, Dr. Kiarash Aramesh and Dr.
Elham Mir Ior sincere cooperation.
Table 1. Critical Ethical Issues in Medical Genetics
Genetic testing
Prenatal and Pre-implantation Genetic Diagnosis
Prenatal Testing, especially Ior non-disease traits or sex
Abortion (therapeutic and selective)
Pre-symptomatic testing in children and adults
Testing Ior genes that predispose to late-onset disease
Testing children Ior a carrier state
Genetic Screening
Privacy of Genetic Information
Stigmatization and privacy
Misuse oI Genetic InIormation
Discrimination in employment
Discrimination in liIe insurance underwriting
Discrimination in health insurance underwriting
Genetic engineering
Gene therapy and Gene transIer research
Eugenics and Dysgenics
Stem cell research and Cloning
Sex and traits selection beIore birth
Banking DNA
Patenting of Human Genes
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