WHAT DO ISLAMIC INSTITUTIONAL FATWAS SAY ABOUT MEDICAL AND RESEARCH CONFIDENTIALITY AND BREACH OF CONFIDENTIALITY?

WHAT DO ISLAMIC INSTITUTIONAL FATWAS SAY ABOUT MEDICAL ANDRESEARCH CONFIDENTIALITY AND BREACH OF CONFIDENTIALITY?dewb_329 104..112

GHIATH ALAHMAD AND KRIS DIERICKX

Keywordsbioethics,developing world bioethics,medical ethics,research ethics,Islam,confidentiality

ABSTRACTProtecting confidentiality is an essential value in all human relationships, noless in medical practice and research.1 Doctor-patient and researcher-participant relationships are built on trust and on the understanding thosepatients’ secrets will not be disclosed.2 However, this confidentiality can bebreached in some situations where it is necessary to meet a strong con-flicting duty.3

Confidentiality, in a general sense, has received much interest in Islamicresources including the Qur’an, Sunnah and juristic writings. However,medical and research confidentiality have not been explored deeply. Thereare few fatwas about the issue, despite an increased effort by both indi-viduals and Islamic medical organizations to use these institutional fatwasin their research.

Infringements on confidentiality make up a significant portion of institu-tional fatwas, yet they have never been thoroughly investigated. Moreover,the efforts of organizations and authors in this regard still require furtherexploration, especially on the issue of research confidentiality.

In this article, we explore medical and research confidentiality and poten-tial conflicts with this practice as a result of fatwas released by international,regional, and national Islamic Sunni juristic councils. We discuss how thesefatwas affect research and publication by Muslim doctors, researchers, andIslamic medical organizations.

We argue that more specialized fatwas are needed to clarify Islamicjuristic views about medical and research confidentiality, especially thecircumstances in which infringements on this confidentiality are justified.

BACKGROUND

The protection of patients in clinical practice and humanparticipants in medical research is of the utmost concern

to health providers and researchers.4 Both clinical prac-tice and research about individuals and groups requirecollecting information and data. However, exposure ofthis personal information can lead to physical or psycho-logical harm to those individuals. Thus, health providersand researchers are obligated to protect the confidentialinformation of their clients.5

1 A. Ryen. 2004. Ethical issues. In Qualitative Research Practice. C.Seale, G. Gobo, J.F. Gubrium, & D. Silverman, eds. London, Sage:230–247.2 J. Giordano, M. O’Reilly, H. Taylor & N. Dogra. Confidentiality andAutonomy: The Challenge(s) of Offering Research Participants aChoice of Disclosing Their Identity. Qual Health Res 2007; 17: 264.3 T. Beauchamp, J. Childress, 2009. Principles of biomedical Ethics.Oxford University Press, New York: 309.

4 C. Zachary, R. Nelson RM & L. Ross. Certificates of Confidentialityin Research: Rationale and Usage. Genet Test 2004; 8 (2): 214.5 Ryen, op. cit. note 1, pp. 230–247.

Address for correspondence: Dr Ghiath Alahmad, National Guard Health Affairs, King Abdullah International Research Center, P.O.Box 22490 mailcode 1515 Riyadh 11426, Saudi Arabia, Email: [email protected] of interest statement: No conflicts declared

Developing World Bioethics ISSN 1471-8731 (print); 1471-8847 (online) doi:10.1111/j.1471-8847.2012.00329.xVolume 12 Number 2 2012 pp 104–112

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Confidentiality is an important and shared humanvalue. It is mentioned in international bioethical guide-lines, such as the Helsinki declaration,6 the Belmontreport,7 the guidelines of the Council for the InternationalOrganization of Medical Sciences (CIOMS),8 and manyothers.

It is vital to establish positive, trusting relationshipsbetween doctors and patients and between researchersand their study participants. Confidentiality is not simplyan expectation of patients built on trust;9 it is a legalmatter.10 Moreover, it involves an ethical responsibility toensure that doctors and researchers are aware of theparameters of applying medical confidentiality. The issueof medical confidentiality becomes more serious whenbreaching privacy and confidentiality leads to discrimi-nation (taking an action against or negative attitudestoward a person based on variations in his or hergenome)11 or stigmatization (socially or economically cat-egorizing people according to their attitudes, stereotypes,beliefs,12 or medical conditions).13

Breaching confidentiality can be acceptable or requiredby medical authorities when failure to act could lead tophysical harm to either to the patient or to people incontact with that patient; such is the case for progressive,infectious diseases, where the doctor or researcher has aduty to protect the health of those who may be at risk.14

Genetic diseases can also provide an ethical conflict,given that genetic information does not simply belongto an individual but is shared by their genetic familymembers.15

Medical confidentiality is a type of confidentialitywhich is in general an important concept in Islam basedon the three Islamic principles: first, the prohibitionagainst backbiting, as mentioned in Quran: ‘neither

backbite one another’ (Qur’an: Dwellings 12); second, theduty to protect secrets; and third, the consideration of theprotection of confidentiality as a kind of loyalty, whichhas to be saved from harm. This is based on severalQuranic verses, especially the verse where some charac-teristics have been highly appreciated: ‘Those who arefaithfully true to their Amanât (all the duties which Allâhhas ordained, honesty, moral responsibility and trusts)and to their covenants’ (Qur’an: The believers 8).16

Institutional fatwas about medical confidentiality havenot been studied and remain poorly understood by non-Arabic authors. Indeed, there is little to no research onthe topic of confidentiality and Islam published inEnglish.

METHODS AND RESOURCES

A fatwa is an Arabic word used in the Islamic jurispru-dence, and means a religious opinion concerning Islamiclaw about a specific new matter issued by an Islamicscholar according general Islamic perspectives anddepending on the primary Islamic resources like Qur’an,Sunnah, consensus, and analogy, besides some secondaryresources. The mufti (the person who issues fatwa) mustbe well informed about both Islamic jurisprudence andabout the matter of the fatwa to be issued.17

In recent decades a new mechanism has grown for theissuance of contemporary fatwas: the emergence of col-lective opinions through special institutions has beenestablished for this purpose rather than individual opin-ions that dominated the long history of Islamic jurispru-dence.18 In those institutes known as ‘juristic councils’, anumber of jurists and experts from various fields of juris-tic, cultural, scientific and economic knowledge meettogether to study new problems of contemporary life andto provide integral solutions emanating from Islamicheritage and the evolution of Islamic thought.19

According, the Sunni School individual fatwas arenon-binding; institutional fatwas have more authority

6 WMA Declaration of Helsinki. 2008. Ethical Principles for MedicalResearch Involving Human Subjects. Available at: http://www.wma.net/en/30publications/10policies/b3/index.html. [Accessed 31 Mar 2012].7 National Institutes of health: The Office of Human Subjects

Research (OHSR). 1979. The Belmont Report Ethical Principles andGuidelines for the protection of human subjects of research. Availableat: http://ohsr.od.nih.gov/guidelines/belmont.html [Accessed 31 Mar2012].8 Council for International Organization of Medical sciences (CIOMS).

2002. International Ethical Guidelines for Biomedical Research InvolvingHuman Subjects. Available at: www.fhi.org/training/fr/retc/pdf_files/cioms.pdf [Accessed 31 Mar 2012].9 Beauchamp & Childress, op. cit. note 3, p. 306.

10 Ibid: 305.11 P.G. Epps, 2004. Genetic Discrimination. In Encyclopedia of Bioet-hics. S.G. Post, ed. New York: Macmillan Reference USA: 956–959.12 J. Crocker & B. Major. Social stigma and self-esteem: the self-protective properties of stigma. Psychol Rev 1989; 96: 608–630.13 R. Tutton & O. Corrigan. 2004. Genetic Databases: Socio-ethicalissues in the collections and use of DNA. In Biobanks: Governance incomparative perspective. H. Gottwels & A. Petersen, eds. New York:Taylor & Francis Group: 143–158.14 Beauchamp & Childress, op. cit. note 3, p. 309.15 Ibid: 309.

16 K. Mubarak. Hal yakshif al-Tabib sirr al-Maridh (Does the doctorexpose patient’s secret?). al-Multqa al-Sihhi 2002; 27: 22–25; H.al-Jubear. Asrar al-Mardha (Patients’ secrets); A. Ahmad. 2007. Ifsha’aal-Sirr al-Tibbi wa Atharoh fi al-Fikh al-Islami (Breaching of MedicalConfidentiality and its Affect in Islamic Jurisprudence). PhD thesis.Collage of Shariah and Law. al-Azhar University; M. Arafea. Sirral-Mehna Wa Iltezam al-Tabeeb be Akhlaqiat al-Teb (Profession Con-fidentiality and Doctor’s Observance to Medical Ethics). al-Mutlakaal-Sihhi 2001; 19: 16–18.17 A. al-Hanbali. 1960. Sefat al-fatwa wa al-Mufti wa al-Mustfti(Description of Fatwa, Mufti and who asks for Fatwa). Damascus:al-maktab al-Islami.18 M. al-Zarga. 1995. al-Fiqh al-Islami wa Madaresoh (Islamic Jurispru-dence and it is Schools). Damascus: Dar al-Shameia.19 International Islamic Fiqh Academy. Available at: http://www.fiqhacademy.org.sa/ [Accessed 31 Mar 2012].

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and some scholars even consider them as a kind of con-sensus, and consequently they understand institutionalfatwas as binding, and can only be changed by anotherinstitutional fatwa.20 This legitimacy of institutionalfatwas gives them more impact, compared with indi-vidual fatwas. On the other hand, we can see someoverlapping between the individual and institutionalfatwas, especially when members of these institutionsissue their own fatwas individually because the scholarmay have a different opinion than the opinion takenby the institution, considering that the institutionalfatwa is the opinion of the majority but not all of themembers.21

However, because there are neither well defined func-tions of these councils nor a clear system to choose theirmembers, they face some difficulties. They only issue reli-gious decisions but have no power to impose their fatwaslegally for two reasons as understood by some authors:first because they are not established on constitutionalbasis that guarantees their effectiveness, and secondlybecause they do not have well defined tasks. Even in thecontext of these difficulties, juristic councils remain thechief resource of fatwas that formulate Islamic point ofview regarding many new matters.22

These juristic councils are national, regional, or inter-national in scope, as illustrated in Table 1.

National councils are established in each countryseparately, usually by the respective governments, and

take a variety of names, like: Dar al-Ifta al-Massriyyah[Egypt] (http://www.dar-alifta.org/default.aspx?LangID=1&Home=1), General Presidency of Scholarly Research& Ifta [Saudi] (http://www.alifta.net/Default.aspx), andIslamic Fiqh Academy (India) (http://ifa-india.org/index.html).

The second type of juristic councils are those managedregionally, where a number of scholars from a few coun-tries in a certain geographical area meet, independent ofgovernmental supervision, such as the European Councilfor Fatwa and Research (ECFR) (http://www.e-cfr.org/ar/), the Assembly of Muslim Jurists of America(http://www.amjaonline.com/), and the Sharia ScholarsAssociation of the Gulf Cooperation Council (http://sslgcc.org/index.php).

Finally, there are international juristic councils, ofwhich there are only two: the International Islamic FiqhAcademy (http://www.fiqhacademy.org.sa/), which is apart of an inter-governmental organization called: TheOrganization of the Islamic Conference (OIC), and theIslamic Fiqh Council (http://www.themwl.org/bodies/default.aspx?d=1&bid=2&l=AR), which is part of alarger, independent organization called the MuslimWorld League. Fatwas stated by both of these two inter-national councils play a significant role in internationalpractice and, in fact, act as referees for regional organi-zations and researchers.23

Collections of fatwas released by these three typesof councils can be found on their websites and in theirpublications, such as the Journal of the Islamic FiqhAcademy.

In addition to these formal councils, another form ofgroup effort is emerging from a different kind of institute,such as the Islamic Organization for Medical Sciences(IOMS) (http://www.islamset.com/ioms/code2004/index.html) and the Islamic Medical Association of North-America (IMANA) (www.imana.org/). These institutesare not juristic councils but medical organizations orassociations interested mainly in issues related to medi-cine. Although they do not release fatwas, they are inter-ested in studying both juristic medical fatwas and thevarious aspects of Islam and medicine.

In addition, there are a few remarkable individualefforts to apply institutional fatwas about confidentiality.This effort involves both jurists, such as Ibn Baz24 andAl-Jubear,25 and medical doctors, such as Chamsi Pashaand Albar.26

20 A. al-Sultan & A. Aal-Abdulhadi. 2009. Al-Ijtihad al-Jama’ee (PluralIjtihad). PhD thesis. Higher Institute of Justice. University of ImamMuhammad bin Saud Islamic University.21 Islamic Fiqh Council in the Muslim World League http://www.themwl.org/bodies/default.aspx?d=1&bid=2&l=AR [Accessed 31Mar 2012].22 A. elkhamlichi. Official site of Doctor Ahmed Elkhamlichi. Availableat http://ahmed-elkhamlichi.org [Accessed 31 Mar 2012].

23 International Islamic Conference of Medical Practice Ethics. 2005.Available at: http://www.saaid.net/tabeeb/60.htm [Accessed 31 Mar2012]; Mubarak, op. cit. note 16, p. 27: 22–25; al-Jubear, op. cit. note 16;Ahmad, op. cit. note 16; Arafea, op. cit. note 16, p. 17: 16–18.24 A. Ibn Baz. Fatawa Ibn Baz (Fatwas of Ibn Baz). Volume 9: 437.25 al-Jubear, op. cit. note 22.26 H. Chamsi Pasha & M. Albar. 2008. Akhlakiyat al-Bohouthal-Tebia’a (Medical Research Ethics). Dar al-Kalam. Damascus.

Table 1. Different Types of Juristic Councils

Juristic Councils

International(Worldwide)

International Islamic Fiqh AcademyIslamic Fiqh Council in the Muslim World League

International(Regional)

European Council for Fatwa and Research (ECFR)Assembly of Muslim Jurists of AmericaSharia Scholars Association of the Gulf

Cooperation CouncilAssembly of scholars of countries of al-Sham

National(Examples)

General Presidency of Scholarly Research and Ifta[Saudi]

Dar al-Ifta al-Massriyyah [Egypt]Islamic Fiqh Academy (India)Fatwa Committee of the National Council for

Islamic Affairs MalaysiaIslamic Religious Council of SingaporeDar al-Ifta (Palestine)The Presidency of Religious Affairs (The Republic

of Turkey)Jordanian General Ifta Directory

106 Ghiath Alahmad and Kris Dierickx


Even though there are many similarities among thedifferent Muslim doctrines with regard to new juristicissues, we have limited this study to Sunni jurisprudenceschools because they represent a clear majority (87%–90%) in Muslim populations.27

In this study, we survey institutional fatwas related toconfidentiality in medical practice and research, and wecompare them with the work of individual Muslimauthors and with international documents. We includethree types of juristic councils, including the only twouniversal juristic councils: the International Islamic FiqhAcademy and the Islamic Fiqh Council; all regionalcouncils (four councils): European Council for Fatwaand Research (ECFR), Assembly of Muslim Jurists ofAmerica, Sharia Scholars Association of the Gulf Coop-eration Council and Assembly of scholars of countries ofal-Sham, as well as eight national juristic councils: Daral-Ifta al-Massriyyah [Egypt], General Presidency ofScholarly Research & Ifta [Saudi], and Islamic FiqhAcademy (India), Fatwa Committee of the NationalCouncil for Islamic Affairs Malaysia (http://www.e-fatwa.gov.my/), Islamic Religious Council of Singapore(http://www.muis.gov.sg/cms/index.aspx), Dar al-Ifta[Palestine] (http://www.darifta.org/), The Presidency ofReligious Affairs [The Republic of Turkey] (http://www.diyanet.gov.tr/arabic/default.asp), and the Jorda-nian General Ifta Directory (http://www.aliftaa.jo/index.php/ar/decisions/list). We selected these eight nationalcouncils because they offer online access to their fatwas,either in Arabic or in Arabic and English.

Because of their broad-reaching intent, includinganswering ad hoc medical questions based on fatwas andthe anonymity of their medical and juristic contributors,we have excluded certain Islamic web sites from thisstudy: www.islamonline.net, www.islamweb.net, www.islamicity.com, www.islam.tc, www.islamtoday.com, andwww.understanding-islam.com.28

RESULTS

As the technology used in medical treatment and researchrapidly evolves, many new ethical dilemmas haveemerged. As a result, many Muslim doctors and research-ers are increasingly asking for guidance on how to applythe laws of Islam in these cases. Juristic institutes havebegun to reflect on these issues and to find solutions,issued in the form of fatwas. For this study, we have

classified our results into two main categories: medicalconfidentiality and research confidentiality. However, wemake a distinction for the conditions of justified breachof confidentiality for both categories, under a separateparagraph.

Medical confidentiality

A thorough review of current fatwas concerning medicalconfidentiality uncovered a special fatwa released by theInternational Islamic Fiqh Academy (A1: Table 2). Thislengthy fatwa was included in its decision No. 79 (10 / 8)1993, and addresses the obligation of maintainingmedical confidentiality but states that, in some cases, it isboth allowed and, indeed, mandatory to disclose confi-dential information.29 These exclusions will be discussedbelow.

This fatwa invited ministries of health and health sci-ences colleges to include confidentiality in their pro-grams; they encouraged the colleges to add this subject totheir courses, to teach doctors about it, and to encouragetheir faculty to pursue research on the issue.30

With the limited exception of the Fiqh Academy(India), no other fatwa related to medical confidentialityhas been stated by national councils (Table 2).

Research confidentiality

In 2005, IOMS not only translated the ‘InternationalEthical Guidelines for Biomedical Research InvolvingHuman Subjects, 2002’ released by CIOMS but alsocompared all items in this document with relevantaspects of Islamic jurisprudence, thus clarifying theIslamic position on the issues presented in this docu-ment.31 In the section regarding confidentiality, thisdocument includes some parts of the fatwa of the Inter-national Islamic Fiqh Academy about medical confiden-tiality No. 79 (10/8) 1993 (A1: Table 2); especially theobligation of confidentiality, and the conditions thatjustifies a breach.32

The international Islamic Fiqh Academy accepted andincluded this document in its fatwa number No. 161 (11/17) issued in June 2006 that discusses the Islamic perspec-tives on medical and biological research on humansubjects.33 (B: Table 2).

The Islamic Fiqh Council in the Muslim World Leagueonly addressed two issues directly, namely, genetic

27 S. Stencel, ed. 2009. Mapping the Global Muslim Population. Wash-ington: Pew Forum on Religion & Public Life: 8; Encyclopedia Britan-nica. Online, Available at: http://www.britannica.com/EBchecked/topic/295507/Islam [Accessed 31 Mar 2012].28 S. Branden & B. Broeckaert. Living in the hands of God. EnglishSunni e-fatwas on (non-)voluntary euthanasia and assisted suicide. MedHealth Care Philos 2010; 14: 1: 29–41.

29 International Islamic Fiqh Academy. 1993. Decision No. 79 (10/8).Available at: http://www.fiqhacademy.org.sa/ [Accessed 31 Mar 2012].30 Ibid.31 A. al-Awadhi, ed. 2005. Islamic universal charter of medical healthethics. Kuwait: Islamic Organization for medical sciences: 129–301.32 Ibid.33 International Islamic Fiqh Academy. op. cit. note 28.



research and stem cell research. In fatwa number 1, cycle15 (October 31, 1998), the council stipulated professionalobligations in genetic research, such as the accurateevaluation of risk, informed consent, confidentiality, andmaintaining respect for human dignity.34 (C: Table 2)

Not a single one of the national juristic councils haveissued any fatwas on the issue of medical research orresearch confidentiality.

Justified infringements of confidentiality

In a fatwa (A2: Table 2) issued by the InternationalIslamic Fiqh Academy, jurists affirmed that a breach ofconfidentiality can be acceptable only if the harm ofmaintaining confidentiality overrides its benefits. In fact,this fatwa distinguished between two types of exclusions– conditions for which breaching confidentiality isrequired and those in which it is allowed but notrequired. This fatwa did not mention every case;however, it gave two forms, or examples, of each type.In cases in which a breach of confidentiality is obliga-

tory, the intent of this breach must be to prevent harmeither to society or individuals. In cases in which abreach of confidentiality is allowed but not required, thedoctor or researcher must see that such a breach wouldbring benefits to an individual or society or be a meansto prevent general harm.

This particular fatwa calls for national medical guide-lines to detail the conditions under which a breach ofconfidentiality is necessary and both how and to whomthis information should be reported. The fatwa recom-mended that authorities notify medical professionalsabout these conditions and procedures.

The Islamic Fiqh Academy (India) has not issued anyspecial fatwa concerning medical confidentiality.However, the issue has been mentioned in two otherfatwas. In its fatwa regarding the ethics and duties ofdoctors, the Indian Academy required that a patient’spersonal information be shared if it can be used as proofthat someone did not commit a crime35 or to notify publicsafety authorities if a driver is impaired by poor visionor drug and alcohol use at the time an accident occurs

34 Islamic Fiqh Council in the Muslim World League http://www.themwl.org/bodies/default.aspx?d=1&bid=2&l=AR [Accessed 31Mar 2012].

35 Islamic Fiqh Academy (India). 1995. Decision (8/1) 33 regards ethicsand duties of doctor. Available at: http://ifa-india.org/arabic/qararat.html [Accessed 31 Mar 2012].

Table 2. Comparison of Councilor Fatwas about Confidentiality

Results

Clinical Confidentiality Research Confidentiality Breach of Confidentiality

Internationalcouncils(Worldwide)

International Islamic Fiqh Academy Special fatwa aboutmedicalconfidentialityNo. 79 (10/8) 1993(A1)

Confidentiality is includedin fatwa No. 161 (11/17)June 2006 (B)

Special fatwa about medicalconfidentiality No. 79 (10/8)1993 (A2)

Islamic Fiqh Council in the MuslimWorld League

No fatwa Confidentiality is includedin fatwa number 1, cycle15 (October 31, 1998) (C)

No fatwa

Internationalcouncils(Regional)

European Council for Fatwa andResearch (ECFR)

No fatwa No fatwa No fatwa

Assembly of Muslim Jurists of AmericaSharia Scholars Association of the Gulf

Cooperation CouncilAssembly of scholars of countries of

al-Sham

Nationalcouncils

General Presidency of Scholarly Researchand Ifta [Saudi]

No fatwa No fatwa No fatwa

Dar al-Ifta al-Massriyyah [Egypt]Fatwa Committee of the National

Council for Islamic Affairs MalaysiaIslamic Religious Council of SingaporeDar al-Ifta (Palestine)The Presidency of Religious Affairs

(Turkey)Jordanian General Ifta DirectoryIslamic Fiqh Academy (India) No specific fatwa No fatwa Fatwa (8/1) 33/ 1995 regards

the ethics and duties of adoctor. (D) Fatwa (8/1) 35/1995 regard ADISE and itsrules. (E)



(D: Table 2). In another fatwa regarding AIDS, thecouncil insists that it is not appropriate to hide a patient’sdisease (AIDS) if it may cause harm to their family orcommunity (E: Table 2).36

None of the juristic institutes have discussed specificcases in which confidentiality can be breached in medicalresearch.

DISCUSSION

Medical confidentiality:

Institutional interest in medical confidentiality can beseen in two kinds of fatwas: fatwas addressing confiden-tially exclusively, such as the fatwa of the InternationalIslamic Fiqh Academy (A1: Table 2), and fatwas address-ing other medical issues that deal secondarily with confi-dentiality, such as the fatwas of the Islamic FiqhAcademy (India) (D & E: Table 2).

The first fatwa (A1: Table 2) is the most importantfatwa to deal with confidentiality. It was issued in1993and clearly states the obligation of maintaining medicalconfidentiality in the medical profession. Moreover, itelucidates some situations in which breaching confiden-tiality is allowed or mandatory.

Twelve years earlier, in 1981, the Islamic medical oathwas developed by the IOMS during the first internationalconference about Islamic medicine; this oath contained aparagraph addressing respecting patients’ confidentialinformation.37 This was the first institutional organiza-tion to make a statement about medical confidentialityfrom an Islamic point of view; individual scholars, suchas al-Razi (825–925)38 and Ibn Abi Usaibia (1203–1270),39 had raised the issue long before.

Fatwa A1 (A1: Table 2) had great influence and hasbeen used as a cornerstone by many authors, such asAl-Jubear40 and Jundi,41 who are not necessarily inter-ested in confidentiality but in sound medical practice.42

Even in this context, these scholars do not explore confi-dentiality in any real depth; instead, they frequentlyrepeat one another’s insistence on the obligation of con-fidentiality without touching on sensitive areas such asgenetic information. A review of the literature on thissubject identified only two books that specialize inmedical confidentiality, those by Al-Jubear43 andAhmad.44 Both authors are jurists who explain confiden-tiality in general terms and try to apply Islamic principlesabout confidentiality to medical confidentiality usingfatwa A1. However, we notice other authors, such asArafea45 and Mubarak,46 are not aware of fatwa A1 anddo not mention it in their publications.

The absence of any direct mention of medical confi-dentiality in the Qur’an and the Sunnah cause doctorsand scholars to depend more on fatwa A1. For authorswho were unaware of this fatwa, the absence of directinstruction in the Qur’an and the Sunnah did not causeany problems; they simply relied on the general Islamicprinciple of protecting confidentiality in order to con-struct an appropriate policy in the medical context.47

Muslim authors often refer to the three basic tenants ofIslam that seem to apply: the prohibition against back-biting, the prohibition against any unnecessary exposureof secrets, and the consideration of the protection ofconfidentiality as a kind of loyalty.48

Fatwa A1 is compatible with nonreligious interna-tional guidelines, such as the Declaration of Helsinki49

and the Belmont Report,50 which state the importanceand obligation of medical confidentiality.

Given the importance of fatwa A1, it seems excep-tional that there are no other fatwas about confidential-ity issued by other councils. What could be the reasonsfor this? Is it, perhaps, that medical confidentiality isnot an important principle in Islamic jurisprudence?Or, perhaps fatwa A1 is enough to clarify the issue forMuslim doctors worldwide? Given the results of thisresearch, it is our opinion that even though fatwa A1 isan important fatwa and sets forth an important ethicalprinciple, jurists do not appear to be fully aware of

36 Ibid.37 Islamic Organization for medical sciences (IOMS). First InternationalConference on Islamic Medicine. 1981. Available at: http://www.islamset.com/ioms/firstcon.html [Accessed 31 Mar 2012].38 M. al-Razi. 1970. Akhlaq al-Tabib: Resala ila Ba’dh Talamethih(Ethics of Doctor: A Litter to Some Students). Cairo: Maktabet daral-Turath.39 M. Ibn Abi Usiabe’a. Auon Al-Ateba’a fi Tabakat Al-Atebba (BestNews About the Categories of Doctors). Beirut: Dar Makatabetal-Hayat.40 al-Jubear, op. cit. note 16.41 A. Jundi. Sirr al-Mihnat bain al-Kitman Wa al-Alaneia (Confiden-tiality of Medical Profession Between Keeping and Exposing). Journalof Islamic Fiqh Academy 1994; 8/3: 117–126.42 A. al-Naqeeb. 1984. al-Ieidad al-Tarnawi wa al-Mehani Lel Tabib(Educational and Professional Preparation of Doctor). Cairo: Daral-Fikr al_arabi; A. al-Jabouri. 2006. Fiqh al-Tabib wa Adaboh fial-Manthoor al-Islami (Jurisprudence and virtue of doctor according

Islamic perspective). Journal of Sharjah, University for religious andhuman sciences Volume: 3: 45–75; Y.A. al-Turki. Muslim DoctorTamayz wa Semat (Muslim Doctor: Excellence and Features). Availableat: http://www.saaid.net/tabeeb/1.htm [Accessed 31 Mar 2012]; A.Mohammed. 1990. Nafh’o al-Teib fi Aadab wa Ahkam al-Tabib (GoodInspiration of Virtue and Rules of Doctor). Tanta: Dar al-Sahaba lilTurath.43 al-Jubear, op. cit. note 16.44 A. Ahmad, op. cit. note 16.45 Arafea, op. cit. note 16, pp. 16–18.46 Mubarak, op. cit. note 16, p. 27: 22–25.47 A. Ahmad, op. cit. note 16; al-Jubear, op. cit. note 17.48 Mubarak, op. cit. note 16, p. 27: 22–25; al-Jubear, op. cit. note 16;Ahmad, op. cit. note 16; Arafea, op. cit. note 16, p. 17: 16–18.49 WMA Declaration of Helsinki, op. cit. note 6.50 The Belmont Report, op. cit. note 7.



the dimensions concerning confidentiality, especially incertain sensitive issues related to genetic diseases orsexually transmitted infections. Moreover, some of thejuristic institutes listed here – specifically, the ShariaScholars Association, the Gulf Cooperation CouncilCountries, and the Assembly of Scholars of Countries ofal-Sham – are all newly established and either may notbe interested in the issue of medical confidentiality or yetprepared to issue fatwas on such complex issues.

Research confidentiality:

Our review of fatwas concerning medical research onboth the national and international levels shows thatthere is a general lack of instruction in this area. More-over, the few fatwas that do address these issues are morelikely brief general statements that lack the specificityrequired for navigating the increasingly complex arena ofmedical research and research confidentiality.

It is our hypothesis that the reason that so few fatwason the subject of research confidentiality and medicalethics have been issued is a reflection of the fact that thefield of medical research is still relatively new, and despitethe rapid progress in other developed countries, it is stillin its infancy in most Muslim countries. As fatwas aretraditionally written in response to actual problemsand pressing problems, this latter point seems especiallygermane.51

In 1998, the Islamic Fiqh Council in the Muslim WorldLeague issued a fatwa (C: Table 2) that addressed theethical obligations required in both genetic research andstem cell research. This fatwa was very narrow in focus,and the issue of confidentiality was given very little atten-tion. As a result, this fatwa is insufficient.

The most important and comprehensive treatment ofresearch ethics and Islam came in 2005 when the IOMStranslated and analyzed the ‘International Ethical Guide-lines for Biomedical Research Involving Human Subjects’from an Islamic perspective.52 The outcome was a docu-ment entitled ‘International Ethical Guidelines for Bio-medical Research Involving Human Subjects – IslamicView,’ which I believe is the most important statementconcerning Islamic guidelines for medical research. Inthis document, the IOMS agrees with fatwa A1 regardingthe obligation of confidentiality in medical practice.53

The IOMS document was so influential that after onlyone year, the Islamic Fiqh Academy referred to it andaccepted it into their fatwa on the issue (B: Table 2). Thisreference only increases the credibility of the IOMS docu-

ment, heightening the possibility that it will be used laterby jurists and institutes when setting guidelines aboutmedical ethics and research confidentiality.

The rare publications by individual Muslim scholars ofresearch ethics and confidentiality from an Islamic pointof view were influenced and began to change in light ofboth the IOMS document and fatwa (B). In 2008, the firstspecialized book concerning Islamic medical researchethics was published. The authors, Chamsi Pasha andAlbar,54 are both experts at the International IslamicFiqh Academy. In their text, they discuss confidentiality,with a special emphasis on genetic research, withoutdelving deeply into the investigation of its dimensions orjustified infringements.

To help jurists in councils issue fatwas, more studies onthe issue of medical ethics and confidentiality are needed.Such research is especially important for sensitive casesinvolving sexually transmitted infections and sharedgenetic information in tribal groups. Because of theemphasis that many Muslim communities place onlineage and the importance placed on procreation onlywithin official and legal marriages, the issue of geneticresearch is especially important to Muslim communi-ties.55 Any breach of confidentiality related to paternitymay lead to discrimination and stigmatization for thechild or parent. Researchers who face these kinds of situ-ations may not know what to do, considering the lack offatwas on the subject.

Given that the goal of most medical research is thepublication of results – a practice that involves significantrisk of a breach in confidentiality – it is obvious the needto establish clear guidelines for Muslim researchers isvery important.

Justified infringements of confidentiality

We observed that the attention of the Fiqh councils wasfocused on two main points, the mandatory obligation formaintaining medical confidentiality, and the justificationsthat allow a breach of medical confidentiality. In contrastwith the first point, where fatwas were limited to pointingout the importance of confidentiality without givingdetails, fatwas that addressed the second point with somedepth and identified many cases where a breach of confi-dentiality may be justified gives the impression that suchfatwas give more importance to the protection of commu-nity, at the expense of maintaining the confidentiality ofindividuals and their interests. Actually, it appears thatthese particular fatwas were built on juristic rules such

51 For more information about the fatwa and how it works please go tothe web site of Dar al-Ifta al-Massriyyah [Egypt] http://www.dar-alifta.org/FatawaConcepts.aspx52 al-Awadhi, op. cit. note 31, pp. 129–130.53 Ibid: 129–130.

54 Chamsi Pasha & Albar, op. cit. note 26; al-Jubear, op. cit. note 16.55 A. Showman. 2000. Masader al-Tashrie’a (Resources of Islamicrules). Cairo: al-Dar al-Thaqafia Li al-Nasher: pp. 27–28.



like the ‘public interest overrides individual interest’.56

However, we also note that those councils in turn failed tomention the public interest controls that regulate violationof medical confidentiality and to what extent breaches arepermitted. In addition, it is noted that the issue of volun-tary consent of the individual to allow the dissemination ofconfidential information had not been considered, neitherthe mechanism to implement that.

We could find only two institutional fatwas concerningbreach of confidentiality: the fatwas A2 by Islamic FiqhAcademy and E by Islamic Fiqh Academy (India).

In fatwa A2, the Islamic Fiqh Academy differentiatedbetween an obliged breach of confidentiality and one iswhich the doctor or researcher is allowed to infringe onthis agreement. This fatwa, which was written in verygeneral language, did not mention any specific cases andleft room for more detailed studies in the future. Specifi-cally, this fatwa did not identify the difference betweenwhat it called: ‘the harm to society’ that is consideredserious enough to require the breach of confidentiality,and ‘the general harm’ that only allows the doctor orresearcher to infringe on their patient’s confidentiality;resulting in the perception that clarification of both termsare needed.

In addition to fatwa A2 and the IOMS document,some authors have begun to discuss exceptions to theobligation of confidentiality. These justified situationshave been adapted and quoted from the IOMS docu-ment;57 most commonly, these authors refer to cases inwhich the patients request that their information beshared, cases in which sharing the information is in thebest interest of the patients or their community, cases inwhich the law or judicial authorities request the informa-tion (to prevent or solve crimes or provide evidence incourt), cases in which the health of a wife or husband is atrisk, or cases in which public health is in jeopardy (that is,to prevent outbreak of an infectious disease).58

Muslim jurists have used the five basic concerns ofIslamic jurisprudence to deduce these exceptions:59 reli-gion, life, mind, money, and progeny.60 This has beenstated in fatwa A2.61 Muslim jurists have built their opin-ions on various juristic rules,62 such as ‘choosing the lesserevil or greater good is always the priority’63 and the idea

that the ‘public interest overrides individual interest’64

However, these jurists do not discuss how to evaluateharm – that is, the difference between major or minorharm and what to consider when evaluating whether abreach in confidentiality is right or wrong. These ideasare used as a basis for evaluation by scholars in the West.Beauchamp and Childress, for example, consider twofactors in particular: the probability of harm and themagnitude of potential harm.65 No doubt, these areimportant points that will need to be studied in depth.

Though some Muslim authors in addition to the IslamicFiqh Academy (India) have discussed justified infringe-ments of confidentiality (Fatwa E), these issues have notbeen investigated sufficiently. For instance, we did not findany studies equivalent to those conducted in Westerncountries, for example on the issue of AIDS. Studies suchas ‘AIDS and Confidentiality’ by Gillett,66 ‘AIDS and aDuty to Protect’67 by the Hastings Center, and ‘To tell ornot to tell: breaching confidentiality with clients with HIVand AIDS’ by Hook & Cleveland have created a nuancedview of the problem outside of the Islamic context.68

Moreover, Islamic fatwas have not explored concernsabout the disclosure of genetic information to thirdparties, an issue that is very important in modern medi-cine and has been extensively investigated by Westernauthors, such as Beauchamp & Childress,69 Andrews, andParker & Lucassen.70

Moreover, none of the institutes or the jurists providedspecific cases of justified confidentiality infringement inthe field of medical research. We assume, however, thatthese cases must occur in clinical research, especially inthe context of research concerning sexually transmitteddiseases or genetic research. Confidentiality infringe-ments in relation to the publication of medical researchare also a new area in which fatwas and additionalresearch will be required in the future.

Despite the importance of both – keeping confidenti-ality, and justified breach as stated in these fatwas – noneof the fatwas discuss the possible drawbacks for breach-ing confidentiality: for example, the case of underminingthe trust of the patient in the doctor or the health caresystem. This obviously is an area that needs deep explo-ration, considering that is a right of patients or researchparticipants.

56 A. Al-Zarga. 1989. Sharh al-Kwae’d al-Fekehea (Enlightenment ofJuristic Rules), Damascus: Dar al-Qalam.57 al-Awadhi, op. cit. note 31, pp. 79–84.58 Ibid: 79–84.59 Ibid: 22–28.60 Showman, op. cit. note 55, pp. 22–28.61 International Islamic Fiqh Academy. op. cit. note 29.62 A. Ahmad, op. cit. note 16; al-Jubear, op. cit. note 16.63 T. Ibn Taymia. Majmoua Fatawa (Collection of Ibn Taymia’sFatwas). 48: 20.

64 A. Al-Zarga. 1989. Sharh al-Kwae’d al-Fekehea (Enlightenment ofJuristic Rules), Damascus: Dar al-Qalam.65 Beauchamp & Childress, op. cit. note 3, p. 307.66 G. Gillet. AIDS and Confidentiality, J Appl Philos 4 (1987): 15–20.67 Hasting Center. 1987. Hasting Center Report 17: 22–23.68 M.K. Hook & J.L. Cleveland. To tell or not to tell: breaching con-fidentiality with clients with HIV and AIDS. Ethics Behav. 1999; 9(4):365–81.69 Beauchamp & Childress, op. cit. note 3, pp. 309–310.70 A. Lucassen & M. Parker, Confidentiality and sharing geneticinformation with relatives. Lancet 2010 May 1; 375(9725): 1507–1509.



CONCLUSION

There is no doubt that the maintenance of personal con-fidentiality is a shared value throughout the world. Islam,especially, places a high value on the principle of confi-dentiality in the broadest sense.

Confidentiality is an essential part of the modern pro-fession of medicine. Confidentiality is built on trust, duty,and responsibility to the well-being of the patient. Pre-venting harm is also crucial in medical research.

Considering fatwas that have already been issued,medical confidentiality seems to be a very importantissue; however, these fatwas do not go far beyond generalstudies and do not fully investigate the issue of patientconfidentiality. Additionally, there is a lack of accurateand detailed research about medical confidentiality, espe-cially in sensitive areas and in determining which casesmay require an infringement of confidentiality.

Confidentiality in medical research is still not wellexplored from an Islamic point of view. More specializedfatwas and comprehensive studies are vital to properly

elucidate the position that Muslim practitioners shouldtake when ethical conflicts arise.

Acknowledgment

We would like to thank Dr. Mohammed Jumah, the executive directorof King Abdullah International Research Center KAIMRC for hissupport and comments on the paper.

Biography

Ghiath Alahmad is a lecturer in the Faculty of Medicine, King Saud binAbdulaziz University for health sciences KSAU-HS, a bioethicist atKing Abdullah International Medical Research Center KAIMRC, anda Chairman of the ethical team of Saudi Biobank at KAIMRC. Hehas a M.D, a specialization in Otolaryngology, BA in Islamic theologyand a M.A in Bioethics. He is a PhD candidate at K.U.Leuven.

Kris Dierickx is a professor of Medical Ethics in the Faculty of Medi-cine, K.U.Leuven. He is teaching at the faculties of Medicine, Pharmacyand Theology. He serves as an ethicist in several ethics committees. Hepublished articles in international journals and books on ethics in genet-ics, research ethics, regenerative medicine, empirical ethics, biobanksand reproductive medicine. He is partner in several national and inter-national research consortia.



Documents

WHAT DO ISLAMIC INSTITUTIONAL FATWAS SAY ABOUT MEDICAL AND RESEARCH CONFIDENTIALITY AND BREACH OF CONFIDENTIALITY?