Welcome to the family of Iranian Human Geneticists



                       Twins’ struggle ends in death

Neurosurgeons separated 29-year-old Iranian twins born joined at the head after two days of delicate surgery, but both sisters died shortly after their operation. 

(Singapur, July 2003)



1FARZANEH ZAHEDI, 2BAGHER LARIJANI1Endocrinology and Metabolism Research Center,2Medical Ethics and History of Medicine ResearchCenter, Endocrinology and Metabolism Research Center, Tehran University of Medical Sciences, Tehran,Iran.

Suppl. No. 1, Jan. 200648Correspondence: Bagher Larijani, Endocrinology and Metabolism Research Center, Shariati Hospital, North Kargar Ave., Tehran, Iran, Email: emrc@sina.tums.ac.ir

The rapid progress of science and technology, including genetic research and technology has been led to new hopes in the treatment of some genetic conditions and diseases. But these developments havealso raised ethical and societal concerns in different communities. Certainly, medical geneticsknowledge should be applied so, we have to maximize its benefits and minimize any harm. In recentdecades, many attempts have been performed by scientists, ethicists, jurisprudents and lawyers forcompiling international and national guidelines for regulation and legislation in this field. For compilation of 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 knowledgeabout genetic ethics for health care professionals in order to facilitate their decision-making in clinicalpractice.There are various ethical issues related to medical genetics that we reviewed in this paper in brief. These key issues do need attention and urgent resolution universally. We also reviewed Islamic viewof points in this regards and finally we addressed the status of genetic ethics in our country, containing new national guidelines in this field. Keywords: Medical ethics, Medical genetic, Genetic ethics, Islam, IranINTRODUCTIONThe ever-increasing progress in science andtechnology has been accompanied by a parallelsuccess in biotechnology and medical genetics. Therapid advances in genetic research and technologyover the last few decades have provided the genetictesting tools for a number of disorders and have ledto new hopes in the treatment of some geneticconditionsanddiseases.Indeed,thesedevelopments have also raised ethical and societalconcerns about how emerging technologies will beimplemented, and how their implementation willimpact different communities. Ethical values andsocial concerns must help us to know how medicalgenetics knowledge will be applied so that wecould maximize the benefits and minimize anyharm. In recent decades, many attempts have beenperformed by scientists, ethicists, jurisprudents andlawyers for compiling international and nationalguidelines for regulation and legislation in thisfield. Genetic testing is subject to a wide range ofnationalandinternationalguidelines,recommendations,declarations,reportsandregulations (1). In this way, the UniversalDeclaration on the Human Genome and HumanRights (1997), and the International Declaration onHuman Genetic Data (2003) have been compiledby United Nations Educational, Scientific andCultural Organization (UNESCO) (2, 3). WorldHealth Organization has also addressed this issuein recent decade (4-8). Regional office for theEasternMediterraneanofWorldHealthOrganization (WHO) in 26th meeting of RegionalConsultative Committee (RCC) in 2002 discussedethical issues related to gene manipulation and itseffects on health care delivery (7). Moreover,different countries have written and conductedsome national regulations (9-13). The social valuesand norms of different cultural environmentsnecessitate the need for development of ethicalstandards and codes.METHODSIn this paper we aimed to review main issues ofmedical genetic ethics and discuss Islamic jurists'opinions about its critical debates. We will alsointend to state the situation of genetic ethics inIran. For compilation of the article, we obtained thedata by means of searching through computerizeddatabases in PubMed, IranMedex, and Ovidsources using keywords such as genetic ethics,genetic test, gene therapy, etc in combination withIslam and Iran. Then we supplemented oursearches via checking the reference lists of thepapers and searching relevant journals. We alsoreferred to some valid English and Farsi books.This intensive review is aimed at providing healthcare professionals a basic knowledge about themain issues in medical genetic ethics in order to facilitate making their decision within clinicalpractice.Main Ethical IssuesThere are various issues related to medical geneticswhich can be related to genetic information merely;or to genetic manipulations or therapies. Somecritical ethical challenges arising in medicalgenetics are listed in Table 1. These key issueswould need necessary global attention and urgentresolution.Pre-Natal Diagnosis (PND) and Pre-ImplantationGeneticDiagnosis(PGD)arepredictivepresymptomatic testing to establish fetus's geneticpredisposition to a particular disease. Families whoare likely to have a child with genetic conditionssuch as Down syndrome or spina bifida can profitfrom antenatal genetic screening. There are severalaspects of genetic testing that may lead to ethicaldilemmas (14). Serious psychological damage,stigmatization in social life, discrimination inemployment, life and health insurance are somerisks of genetic testing. Genetic labeling could be asignificantformofmorbidity.However,advantages of antenatal screening consist of areduction in births of children with burdensomeconditions, reduced risks to mothers, reducedpublic costs of care, and our greater freedom ofchoice. Prenatal genetic screening is commonlyused to identify high risk pregnancies regardingbirth defects, such as neural tube defects andgenetic conditions like "Down syndrome" (14).However, for some hereditary disorders, PNDremains controversial, particularly when thediagnosis leads to a decision of pregnancytermination for a disease that, unlike Tay-Sachsdisease, is not definitely an untreatable, fataldisease of infancy (15). Abortion in geneticdisorders of fetus is a critical debate in genetictesting.Another growing clinical application of genetictestingistheidentificationofgeneticpredisposition to disease in order to guide earlyintervention and preventive care. This type ofgenetic testing is another field in which ethicaldilemmas frequently arise. In some disorders (suchas Huntington disease, breast or ovarian cancer),existence of a mutant allele may cause a disablingdisease later in life, but testing for some conditionsfor which there are no treatments have the potentialto cause psychological harm, stigmatization, anddiscrimination. Genetic testing for Huntington’sdisease (a progressive motor and cognitive disorderwith onset in midlife) is one example (14).Although identifying carriers could have benefitsbut potential harms could arise from testing.Informed consent for testing, privacy of personalgenetic information, and providing consultationand treatment facilities are important headings ofethical issues.Considering these issues, International Declarationon Human Genetic Data has defined acceptedpurposes of genetic testing (3). According to thedeclaration, human genetic data and humanproteomic data may be collected, processed, usedand stored only for the purposes of: (i) diagnosisand health care, including screening and predictivetesting; (ii) medical and other scientific research,including epidemiological, especially population-based genetic studies, as well as anthropological orarchaeological studies, collectively referred tohereinafter as “medical and scientific research”;(iii) forensic medicine and civil, criminal and otherlegal proceedings, taking into account theprovisions of Article 1(c); (iv) or any other purposeconsistent with the Universal Declaration on theHuman Genome and Human Rights and theinternational law of human rights (3, Article 5 ).In recent years, interest in application of geneticdata in workplace by employers or insurancecompanies to identify genetically prone employeeshas been increased. These measures have led tomajor concerns by the public and some legislatorsin some countries (16). Several states in the USAhavepassedgeneticprivacy andgeneticantidiscrimination laws (16).A debate is ongoing in different communities on"designer babies" or "transgenic man". Prenatalselection for some desirable alleles and genes forcomplex traits (such as personality, intelligence,and physical characteristics) and sex selection havearoseconsiderablediscussionsworldwide.Although sex selection for reduction of the risk ofsex-limited or x-linked diseases is justifiable, thereare serious ethical and social debates about sexselection only for parent's request based on socio-cultural tents or economic reasons, such as one sexsuperiority over other.Additional problems may arise from geneticscreening programs. The ultimate objective ofgenetic screening is to improve the public healthbut there may also be unintended negativeconsequences. Disregarding of standards ofinformed consent, risk of overt or impliedcompulsion, and contingency of unauthorizedaccess to samples or data are some ethical issueswhichrequireappropriateattentionsandsupervisions (15).In medical genetic ethics, a great deal ofimportance is placed on the individual informedconsent. Human genetic data have a special statuson account of their sensitive nature since they canbe predictive of genetic predispositions concerningindividuals and the power of predictability can bestronger than assessed at the time of deriving thedata; they may have a significant impact on the F. Zahedi50family, including offspring, extending overgenerations, and in some instances on the wholegroup; they may contain information that itssignificance is not necessarily known at the time ofthe collection of biological samples; and they mayhave cultural significance for people or groups (3).Privacy of genetic information is a central ethicalprinciple in medical genetics. Internationaldeclarations endeavor to protect the privacy ofindividuals and the confidentiality of humangenetic data linked to an identifiable person,family, or an ethnic group (2,3). Most ethicistsagree that, while confidentiality is important, thereare situations in which confidentiality can bebroken. The most common example involves aduty to warn; e.g., a pilot at high genetic risk ofheart failure.Genetic engineering has been the inspiration forexciting science fiction for many years. Sincegenetic engineering is regarded as having thepotential to manipulate human nature itself; itencapsulates people’s fears regarding future abusesof science (17). Main genetic engineering issuesconsist of gene therapy (somatic cell and germcell), eugenics, stem cell research and cloning, pre-implantative intervention and selective abortion.There are significant ethical issues in the field ofsomatic cell manipulation such as the need tobalance any potential benefits and harms, the safetyand effectiveness, selection of subjects, informedconsent,andprotectionofprivacyandconfidentiality. Germ line manipulation is a seriouscontroversy worldwide. Gene therapy that involveshuman germ line cells is not ethically acceptableby most ethicists and is not permitted by existingofficial guidelines.Eugenics involves improving the gene pool byelimination of defective genes, and improvingattributes such as intelligence and personality.There are historical unethical experiments such asinvoluntary sterilization in USA (18) in order tobreed a “superior race” in the first half of the 20thcentury. Currently, eugenic genetic engineering forselection against personality, character, formationof body organs, fertility, intelligence and physical,mental and emotional characteristics is prohibitedin almost all countries. An area of interest is therealm of transgenics for the purposes of treatment.The most common use of transgenic technology isin xenotransplantation (19).Stem cell research and cloning are two subjectsthat have raised a series of ethical and public-policy questions that are now being confronted bymultiple international organizations, nations,cultures, and religious traditions. Key ethical issuesfacing in these fields consist of human dignity andmoral status of human embryo, time of beginningof life, the destruction of pre-implantationblastocysts, slippery slope of dehumanizingpractices, justice and resource allocation (20).There are substantial debates regarding the specificstage that dignity is conferred in development(conception,primitivestreakdevelopment,implantation, ensoulment, or birth).There are various challenges about genetic tissuebanking that are likely to come from the complexorganizational, social, political, and ethical aspectsof this subject. Concerns about subjects' rights,informed consent, privacy, and ownership ofgeneticmaterialrequireattentioninthedevelopment of DNA banks (21). Adequateanonymization, consent and protection of thesamples must be considered in research banks (19).Questions also arise about patenting of life forms,genes and various other human proteins (16).Ownership of DNA and patenting has been issuedin the world for genes and gene sequences sincebringing up Human Gene Project (HGP). Thisissue and related ethical challenges is alsodiscussed by World Health Organization recently(8). Other societal concerns about medical geneticsinclude fairness in the use of genetic information,reproductive decisions and reproductive rights,conceptual and philosophical implications, safetyandenvironmentalissues,andthecommercialization of products including propertyrights and accessibility of data and materials (22).There are also other questions related to socialimplications in choices for marriage partners (23)and assisted reproduction techniques.Islamic PerspectiveThere is no conflict between science and religionfaith in Islam. Also, the performance of research onhuman subjects is Islamically acceptable, aresearcher should comply with the framework ofIslamic law in any research that he/she undertakes(24). The incidence of genetic diseases in theIslamic world is high because of social and otherfactorsthatpromoteconsanguinity(25).Therefore, genetic services should be made acomponent of public health care systems. Muslimreligious scholars, research scientists and policymakers should collectively and continually ponderover these questions and take steps to effectivelydeal with the situation (23,26). It is duty of Muslimethicists and jurists to analyze new modern issuesof medicine and biotechnology and informMuslims about the religious and ethical approachesregarding such issues. Some ethical issuesassociated with medical genetics have been dealt insome details by Muslim jurists of the sunni andshi'a schools.Since Islam calls attention to pain alleviating anddisorder healing, there is no serious ethical debateagainsttherapeuticstrategiesappliedfor prevention, delaying onset, or carrying outappropriate care for genetic disorders (25). Genetictesting is not prohibited in Islam, and so prenataland presymptomatic testing are acceptable if theaim of them would be prevention, delaying onset ofdiseases, improvement of qulity of life, or diseasestreatment. Genetic screening for detection ofgenetic abnormalities and possible cure of birthdefects, and so genetic counseling would beacceptable (27,28).In Islamic communities some components ofgenetic counseling and testing are sensitive pointsand the transfer from one social context to anotherneeds careful consideration (25). For example;prenatal testing is faced with some limitations,although it is allowed in Islam (25). Althoughtherapeutic abortion would be permitted before 120days counted from conception under specialcircumstances (29,30) elective abortion is generallyunacceptable (30,31).Gene therapy should be used solely for therapeuticpurposes (32) and it should not be used to promotedestructive purposes. Somatic gene therapy andreplacement of defective genes is acceptable fromviewpoint of Islamic jurisprudence (27) but germline gene therapy is prohibited. It has potential ofaltering the genetic make up and otherconsequences for the next generations, and there isenough knowledge about its complications andrisks (7). Meanwhile, based on opinion of mostMuslim jurists, gene therapy that has effect on thefuture progeny is impermissible (33).Genemanipulationotherthantherapeuticapproaches is not allowed in Islam. Hence,eugenics and dysgenics could not be performed inhuman according to majority of Muslim juristsopinions. (27,32). However some jurists permittedhuman fetus gene manipulation for skin colorchange, intelligence improvement and etc incurrent years (30). Surgeries to treat congenital oracquired deformities to restore normal shape orfunction of an organ are also permissible (33). Sexselection is not acceptable except for medicalreasons in gender related diseases. Islam teachescontented with the will of God (27). Similarly,Islam is not in agreement with 'designer babies' or'transgenic man'. The issue of 'plying God' andaltering creation through gene therapy, particularlyfor cosmetic reason, and unnecessary changes inappearance has been considered in some "Fatwas".The majority of Muslim jurists have permitted thisif an abnormality accompanied with physical orpsychological harms. Human equity despitedifferences in race, color, gender, and otherphysical characteristics is emphasized in Islamicteachings. We would read in Holy Qur’an that:"Oh mankind! We created you from a single (pair)of a male and a female, and made you into nationsand tribes, that you may know each other (Not thatyou may despise each other); 49/13".The Islamic Figh Academy (IFA), a subsidiaryorgan of the Organization of the IslamicConference (OIC) affiliated to the world Muslimleague (WML) addressed the ethical guidelines ofgenetic engineering in its 15th session in 1998.Based on recommendations of the OIC, it iscategorically prohibited to use genetic engineeringto attain evil aims or to reach prohibited means(33).The use of genetic engineering in agriculture andanimal breeding under necessary precautions arepermitted (30). However, producing GeneticallyEngineered Micro-organisms, foods and transgenicanimals or plants could be permitted and performedfrom Islamic perspective (30). In plants andanimals' gene manipulation, environmental risksmust be considered and eliminated (30). Geneticchanges and related experiments in animals arepermitted in Islam but additional harms and torturemust be avoided (30).According to inevitable consequences of humanreproductive cloning, it is prohibited due tomajority of Muslim reference decrees (34). Stemcell research and cloning for therapeutic purposesis permissible (27,30,35-37) with full considerationand all possible precautions in pre-ensoulmentstages of fetus development (34, 38).Medical Genetics Ethics in IranIran, a large country with a population of 67million, represents a highly heterogeneous genepool and mutation spectrum due to thegeographical, cultural and ethnical diversity (39).Iran is a member of Genetic Research Networkestablished in Eastern Mediterranean Region in2004 (40,41). The number of centers for geneticresearch in Iran has been increased in recent yearsand an emphasis on ethics has been voiced bymedicalandreligiousauthorities(42-49).Compilation of a strategic plan for medical ethicsactivities carried out in 2002 by the Research andTechnology Deputy of Ministry of Health andMedical Education (43). Currently, National andRegional Ethical Committees in universities andresearch centres supervise genetics and othermedical researches for protection of humansubjects. Any discussion of ethical issues needs totake place within a framework which incorporatesthe principles of justice, autonomy, beneficenceand non-maleficence (22); despite the fact thatIran, as an Islamic country, has own interpretationsabout these principles that we would explain inother article. In two studies (50, 51), Dr. Farhud etal. have investigated the point of views ofphysicians, nurses, midwives and medical studentsabout principles of medical genetics. They F. Zahedi52concluded that there is highest agreements on theprinciple of proportionality (88–91%), beneficence(75–89%), followed by autonomy (72–80%) andjustice (70–83%) (50). Beneficence, according tothe views, was the main look out for makingdecision (51).Currently there is no absolute restriction on geneticresearch in Iran, however moral principles andethical codes must be completely followed. The“NationalEthicalGuidelinesofMedicalResearch”, including genetics research has beencompiled recently. Based on the guideline, geneticresearches are permissible only if their purposeswould be:1. To diagnose, classify or screen geneticdiseases2. To define genetic predisposing factor of adisease before it appears, if there is an efficientway to prevent or reduce the complications.3. To provide consultation for couples aboutgenetic risk factors of their offspring.4. To alleviate, prevent or cure diseases andnot for eugenics5. Forensic medicine6. Population based genetic research regardingscientific and ethical principlesAccording to the guideline, prenatal diagnosis ispermissible only if it is concerned with mother orfetus health. It should be mentioned for parents thatprenatal diagnosis does not guarantee the “health ofbaby”. The probable risk for mother and fetusshould be described for parents.Eugenic researches are not permissible based onthe national guideline and sex selection is allowedonly in X-linked disorders. Human reproductivecloning is also prohibited. Stem cell research ispermissible to obtain embryonic and adult stemcells, regarding scientific and ethical principles.But researches on residual embryos could beconducted only after parent’s consent.Iran's Muslim shi'a religious leaders have issueddecrees authorizing animal cloning but banninghuman reproductive cloning. Consequently, Iranianresearchers of Royan Institute reported thederivation of a new embryonic stem cell line(Royan H1) from a human blastocyst two yearsago(52). In addition, Iran hopes to celebrate thebirth of cloned sheep in the near future (53).Abortion is a main debate in the subject of prenatalgenetic testing. There are many different culturalperspectives about therapeutic abortion and thetime that human life begins. Therefore, there isn'tuniversal agreement on the issue of pregnancytermination following prenatal diagnosis. Theparliament of the Islamic Republic of Iranapproved a new act on abortion "21 June 2005"(54). Previously, religious scholars had beenallowed abortion in untreatable and geneticdisorders with 3 criteria; definite diagnosis, before4 months of gestation, and unusual problems forfamily. Under the new law, a pregnancy can beterminated within the first four months ofpregnancy if the fetus is mentally or physicallyhandicapped, or where the mother's life is likely tobe in danger (54). Three specialists must confirmthe problem. Legal Medicine Organization hasdefined 51 fetal and maternal disorders, includingsome genetic disorders that could be considered inthis act.Twenty-nine indications are fetalabnormalities and disorders such as OsteogenesisImperfecta, Osteochondrodysplasia, OsteopetrosisInfantile,Alpha-thalasemia,Trisomyofchromosomes 3,8,13,16,18, etc.CONCLUSION AND RECOMMENDATIONCultural differences in various countries and ethnicpopulations should be considered and reflected inthe recruitment, and in the structuring andcomprehension of the genetic ethics rules. Ethicseducation for scientists and general population areessential for better mutual understanding of ethicalchallenges in the society. General health careproviders currently do not have expertise in clinicalgeneticsorinmoleculargenetictesting.Widespread education for health professionals ingenetics, risk assessment and behavior change isneeded across the globe (55). Clinicians must beinvolvedinconsideringethicalquestionsassociated with any genetic tests. Addressing thesequestions require a continuing dialog andcooperation between physicians, researchers,religious scholars in our country and within otherIslamic countries.According to International Declarations on medicalgenetics, compiling culturally-adopted nationalguidelines, as a necessary action, should befollowed by scientists, ethicists, jurisprudents andlawyersinallcountriesoftheregion.Establishment of a national well-controlled systemand appropriate ethical and scientific supervisionof medical genetics programs in each countryshould be enhanced to make sure that the advancesin human genetic knowledge and technology areused responsibly, fairly, and humanely. Moredistinct supervision is necessary for non-therapeutic genetic screening.Considerable attention should be paid to justice indistribution of genetic advances’ benefits and inresource allocation at national and internationallevel. Regarding our mutual believes and ethicalvalues, the necessity of strenghthening the"Regional Genetic Network" including an ethicalconduct should be considered.As it stated previously the public also needs tobecome more acquainted with genetic tests.Improvements in public awareness will alleviate some of the extensive pre-test education needs thatexist currently (55).With the increasing number of identified genescausing diseases and the existence of geneticvariation between different populations in theworld, establishment of population- specific DNAbanks could provide valuable sources ofinformation and sample for medical geneticresearch in the field of diagnosis, prevention andhopefully cure of hereditary diseases world-wide,though the ethical values in this field must beprecisely respected.


We would like to thank Dr. Eghbal Taheri for hervaluable comments. We also wish to thank Dr.Elaheh Motevaseli, Dr. Kiarash Aramesh and Dr.Elham Mir for sincere cooperation.

Table 1. Critical Ethical Issues in Medical Genetics• Genetic testingo Prenatal and Pre-implantation Genetic DiagnosisPrenatal Testing, especially for non-disease traits or sexAbortion (therapeutic and selective)o Pre-symptomatic testing in children and adultsTesting for genes that predispose to late-onset diseaseTesting children for a carrier stateo Genetic Screening• Privacy of Genetic Informationo Stigmatization and privacyo Misuse of Genetic InformationDiscrimination in employmentDiscrimination in life insurance underwritingDiscrimination in health insurance underwriting• Genetic engineeringo Gene therapy and Gene transfer researcho Eugenics and Dysgenicso Stem cell research and Cloningo Sex and traits selection before birth• Banking DNA• Patenting of Human GenesREFRENCES1. EuroGentest Network. International guidance from official international documents. 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