The Dilemma of Revealing Sensitive Information on Paternity Status in Arabian Social and Cultural Contexts
- First Online:
- Cite this article as:
- Adlan, A.A. & ten Have, H.A.M.J. Bioethical Inquiry (2012) 9: 403. doi:10.1007/s11673-012-9390-y
- 422 Downloads
Telling the truth is one of the most respected virtues in medical history and one of the most emphasized in the code of medical ethics. Health care providers are frequently confronted with the dilemma as to whether or not to tell the truth. This dilemma deepens when both choices are critically vicious: The choice is no longer between “right and right” or “right and wrong,” it is between “wrong and wrong.” In the case presented and discussed in this paper, a research team in Saudi Arabia unintentionally uncovered information regarding misattributed paternity. In such a situation and in the context of a tribal cultural system, what should the team do with this information? This case analysis demonstrates the joint application of ethical resources originating from within and outside the Saudi Arabian context. The article analyses the case based on the moral problems involved, relevant medical application, and the impact of such information in the Saudi tribal and Islamic domains. The most pertinent relevant values and secular debates on similar matters are discussed. Finally, the article aims to provide an Islamic dimension of family, fatherhood, and adultery.
KeywordsIslam Islamic culture Paternity Saudi Arabia Trust Truth-telling
In a genetic research project that took place in Saudi Arabia, an ethical issue arose in relation to one participant, a 13-year-old girl with severe mental and physical challenges. The girl is the only daughter of a Saudi family that resides a long distance from the nearest city. The mother is a housewife with a high school education, and the father earns his living from a midlevel, civil service job. The parents, along with their daughter, are regular visitors to major hospitals in the capital city. Despite the burden and distress of such visits, the parents seem in full harmony. To avoid the possibility of having another child with the same condition, however, they have decided not to have any more children. Learning of the possibility that the girl’s condition could be the result of an inherited gene mutation (with the father convinced that the gene responsible for his daughter’s condition must have been inherited from him), the family was invited to participate in genetic research being conducted by the treating physician. The main purpose of the research was to identify the implicated gene and compare the possible mutation of this gene to what already has been discovered by other international research centres. The treating physician, acting as the principal investigator for the research project, invited the family to participate. Although the daughter was the “actual” research participant in the study, both parents were asked to supply blood samples (as the project was genetic in nature) in addition to the daughter. The family consented and were fully informed that the daughter would not directly benefit; it is assumed they participated for altruistic reasons as well as perhaps to determine and better understand the genetic nature of their daughter’s condition. The consent forms, signed by each parent individually, indicated that the family had the right to know all information revealed by the test. During the course of the study, results indicated non-compatible paternity, meaning that—while the wife of the couple is the biological mother of the daughter—the husband is not the child’s biological father. The tests were repeated for potential errors, but the results were confirmed every time. The family also was consulted about whether they had used artificial reproductive technologies such as in vitro fertilization (IVF) with regard to their daughter, as this could suggest that a laboratory error (e.g., using the wrong sperm) was the cause of the non-compatible paternity. The family confirmed, however, that the child was conceived naturally without IVF treatment, leaving the possibility that the child had been conceived outside of the marriage.
The medical condition of the daughter, who is unable to advocate for herself, is incurable, and she faces a future of ongoing medical attention and health care. The prognosis is not promising, yet compassionate treatment and social support could contribute positively to her general well-being and health. In the social context of a deeply rooted tribal culture, such as that which exists in Saudi Arabia, information of this nature could have serious consequences for the daughter, both of the parents, and even other family members and beyond, ranging from stigma to life-threatening repercussions. Because of this, the research team consulted the Human Ethics Committee of the hospital in which the research was being carried out regarding the most appropriate course of action. The primary question involved was whether or not to disclose to the family the information about paternity.
The Social Context
In Saudi Arabian Islamic and tribal culture, the notion of dignity and honour is highly valued (Al Abed and Hellyer 2001). People are willing to die or even kill for the cause. Social image and dignity are to be preserved at any cost (Abu-Odeh 1996; Al-Krenawi and Graham 1999). Dignity becomes particularly sensitive when it is related to marital infidelity and the “purity” of sexual relationships (Abudabbeh 1996; Abu-Odeh 1996). Sexual affairs outside the marital relationship are not tolerated. Any affair, either confirmed or non-confirmed (as accusation), often results in serious social consequences, particularly for the woman (Nahas 1954; Abu-Odeh 1996).
In this case, the social consequences of disclosing the information would be devastating to both the family and the family’s relatives. Within the Saudi tribal context, conceiving a child outside of marriage is regarded as dishonourable infidelity. A woman convicted of consented infidelity will face severe consequences, potentially resulting in death at the hands of her own father or brother. If she survives, the husband is obliged to “reclaim” the honour of his family (Abu-Odeh 1996). Because divorce in many of these situations would seem too “lenient,” death of the convicted woman and her partner who perpetrated the act may be likely as the only “acceptable” measure. If the family’s honour is not “reclaimed,” the husband is then regarded as a cuckold and undeserving of that honour. He faces the possibility of a spending the rest of his life in shame—demeaned and disgraced and a member forever stigmatized by the tribe because of this “blemish” on his record (Sev’er and Yurdakul 2001).
With regard to the wife, if her husband elects to divorce her, then it is the responsibility of her family (her father and/or brothers) to cleanse the “stain” (Sev’er and Yurdakul 2001; Abu-Odeh 1996). If her father/brothers elect not to take action, however, they risk becoming victims of exclusion, desertion, and renouncement by their tribe as well, resulting in an eternal curse on the family, even the youngest members. For example, the wife’s mother might receive her share of incrimination for “poor maternal conduct” (under the guise of a “like mother like daughter” notion). The wife’s sisters might never have a chance to marry, or, if they are already married, their chances of divorce might suddenly increase.
Individuals in such a context can react first and foremost according to traditional convictions, while ignoring governmental laws and Islamic injunctions. In other words, the perception of injured dignity can receive priority over other considerations.
Such crimes of “honour” are not rare in Arabian countries (Abu-Odeh 1996). This has nothing to do with Islam but is a purely cultural issue; many Muslim scholars condone that kind of murder (Sev’er and Yurdakul 2001). Islam has injunctions to tackle adultery that are meant to be principally deterrent, as the act would involve an innocent victim in the making: the child. Unless the mother has been raped and out of shame or fear of breaking her marriage opted not to tell her husband, she would be held accountable for her otherwise consented act.
General Ethical Considerations
The present case features real-life events, where the rights of different stakeholders have come into conflict. It poses ethically challenging questions: Should we say what we know? And do we have the right to say what we know (Lucast 2007; Ross 1996; Lucassen and Parker 2001; Davies 2008; Wright et al. 2002)? Like many other ethical dilemmas, this situation is not about what is the right thing to do; it is, rather, about what is the lesser evil.
Informed Consent and Other Legal Concerns
Informed consent serves as the legal contract between the researcher and the research subject. Whatever is mentioned in the document should be applied and respected. Some bioethicists advocate including the risk of finding misattributed paternity in the informed consent process. Advocates of this line of reasoning emphasise “autonomy” as the leading value. Lucast (2007) strongly disagrees with incorporating the risk of revealing such data in the informed consent. Moreover, even with consent to reveal information about paternity, it is difficult to foresee how individuals and families will respond when confronted with such information in actual circumstances.
Does the informed consent agreement oblige the research team to release the unsought information? The informed consent documents indicated that all “information” would be made available to research participants. The agreement did not specify, however, what might constitute “information”—solely clinical findings related to genetics and gene mutations or any findings that might be indicated by the tests conducted. “Information” could involve other elements, which might imply unsought information including—but not limited to—paternity status. Thus, it could be argued that there is a legal obligation to reveal even unsought information. The obvious counterargument is that the word “information” should not be taken out of its medical and research-oriented context. This would mean that the only obligation on the part of the researchers relates to the clinical findings. Another premise, however, is the idea that the father is legally the owner of his genetic make-up, as well as the legal guardian of the child’s. This would give him a legal right to know any related information.
On the other hand, information about the child’s paternity might enable the father to compromise the child’s welfare, and, thus, the bests interests of the child may need to be considered and might trump the father’s right to know. The child must be protected, even from his or her own guardian(s), if necessary.
According to Saudi civil and criminal law, paternity tests must only be carried out in the governmental laboratories of the Forensic Evidence Department under the auspices of the Ministry of Interior. Paternity cases should be pursued in a court of law and only a judge should determine when a paternity test is allowed. Saudi courts of law are based on Islamic Sharee’a laws. In Islam, the child is always the son or daughter of the husband, even if a paternity test reveals otherwise. DNA or other paternity tests are used in the Saudi courts as exhibits rather than compelling evidence of fact. The child will always be called after the husband unless the husband requests his Islamic right of Li’aan, when he is 100 percent certain and is willing to call for God’s eternal damnation if he is mistaken.
Trust, Truth-Telling, and Conflict of Confidentiality
Trust is at the heart of the physician–patient relationship. In the case at hand, the father trusts the researcher, the treating physician, to be honest in conveying the results. Yet the expected truth is detrimental in nature. Immediate family members and others relatives will suffer real consequences. The truth in this case may be devastating, so would it be wise to initiate such damage and under what conditions and situations should a researcher disclose or keep silent? The virtues of keeping patient trust (in relation to the father) and telling the truth are in conflict with the confidentiality of the mother and child. In the given context, could the father live with the truth and handle the stigma that comes with it? Does the fact that the information is not relevant to the study’s clinical findings have an effect on any obligation to tell?
These questions are fundamental in order to reach a sound ethical verdict. If the doctor or hospital elects to tell, then they honour the father’s trust but, at the same time, infringe upon the mother’s and child’s rights of confidentiality. In addition, the information, if disclosed, may jeopardize someone’s life and, potentially, more than one life. The values of honouring trust (in relation to the father) and truth-telling contradict with the values of preserving the trust, confidentiality, and lives of the mother and daughter and even more distant family members.
Autonomy: The Father’s Informed Choice to Raise the Child
Having a daughter with such a condition is extremely stressful and affects all aspects of the family’s and the father’s life. Some might argue that the decision to provide life-long care for a physically and mentally challenged child should be an autonomous one. The rationale behind this moral stand can be attributed to the father’s right to decide, in the light of the new information. However, this does not take into consideration the cultural context. In Saudi Arabia, such information will bestow serious responsibilities on the man to reclaim his injured dignity. By disclosing this information, a potential criminal is created with regard to the father, as he is obligated to take an action, and potential victims are created with regard to the wife and her female relatives (i.e., her mother and sisters). From a utilitarian perspective that considers the greatest good, such information must be kept classified.
Protecting Well-Being and Nonmaleficence
Health-related research has a long history and a sophisticated code of ethics. Every research ethics document prioritises participant well-being over the research process (Griffiths 2006). In this context, the research process is not the important factor; it is the unsought information. However, any product of the research should not prove harmful to the participants. If a team discovers that its research may cause harm, it should act responsibly to prevent this harm. In many instances, the failure of a research team to reveal information corresponds to one of the most important ethical principles of health-related research—the principle of nonmaleficence (Edwin 2008). In this case, however, harms might arise from both “telling” and “not telling.”
For instance, the child’s medical condition is a financial burden for the father and also requires that he frequently request leave from work to attend to his daughter’s medical appointments. He appears to be doing this of his own free will, which may indicate his love for the child and a sense of duty toward her. His decision not to have any more children, linking the child’s condition to a trait in his own genetic makeup and refraining from placing physical or moral blame on his wife, could be regarded as a noble act. In this situation, many might feel sympathy for him and believe that he is a victim of deception. Some bioethicists would argue strongly for disclosure of the information as they view “not telling” as “rewarding the infidel.”
On the other hand, disclosure of the information likely would result in the mother being alienated, stigmatized, and rejected by most people in her immediate social network, including members of her own family, as well as others within the larger society. In some extreme cases, she may face death. In fact, she might feel that the discrimination and other real-world penalties she faces result in a form of social death, perhaps even compromising her own will to continue living. Thus, nondisclosure of the information is in her best interests and serves not only her well-being but also that of her child and other relatives.
The information, if revealed, would directly compromise the daughter’s well-being. Bearing this in mind, the child participated in the research protocol through the consent of her parents, who understood that the study would have no relevance to her clinical care. The genetic information related to her medical condition ostensibly makes no difference for the child. Disclosing paternity, however, does. Doing so might not only compromise her health care but also the emotional and social support she receives from a loving family and, thus, the chance of a dignified life. The daughter, moreover, seems to have an emotionally close relationship with the father. This was evident during medical and research-related tests: When she cries out for him, he calms her. Revealing the paternity information might mean that the child would no longer be welcomed in the father’s house and perhaps could be placed in a charity home or governmental hospital.
Ethical Considerations in an Arabian Context
The Ruling of Necessity in Islam
Based on the concept of “necessity,” it is permissible to commit even non-permissible acts in certain situations (e.g., while drinking wine is forbidden, it is permitted if someone’s life depends on it). Most scholars define this as the choice between the forbidden (Haram) and a non-favoured action to protect one of the three main sacred values: blood (an action to protect life), possession (an action to protect ownership, money, and property), and honour (an action to protect dignity). Necessity is one of the most important ruling judgments in Islamic Sharee’a jurisprudence. A ruling of necessity in this case neutralises the value of truth-telling, as the latter poses a serious threat to life.
The Unity of the Family in Islam
The client in this genetic research is the family (Davies 2008). But problems arise when the interests of different family members come into conflict. Whose interest is respected or prioritised?
In the 1980s, a U.S. survey among caregivers that confronted cases similar to the one presented here discovered that the majority of participants elected not to tell on the basis of the mother’s vulnerability and to protect the family (Ross 1996). In 1994, a report by the Institute of Medicine’s Committee for Assessing Genetic Risks recommended to tell the mother only, for the same reasons (Ross 1996). One can argue that this case is no different. In Saudi Arabia, family is one of the most important values. Thus, nondisclosure is at the heart of keeping the family intact and promoting the value of family.1
Marriage, moreover, is essential when it comes to having children, and in Islam, the only permissible way to conceive a child is under the umbrella of that family (i.e., legal marriage). The family bed (firash)—i.e., where husband and wife share intimacy—has its own sacred rank in Sharee’a law, and it is simply the divine right of children to assume kinship to the wedded couple. If conception is achieved using IVF techniques, then the sperm and the egg must be harvested from currently married couples. Priority is given to the welfare of the child to have known biological parents who both share the responsibility of raising him or her to the best of their abilities. The child’s welfare is protected by the marriage contract or the sacredness of the family bed. Based on this value, it can be strongly argued that the welfare of the innocent child in this case is far more important than the father’s right to be informed. Therefore, in this light, keeping the family intact may be the best decision.
Fatherhood in Islam
Confession: When a sane, free person (not enslaved) confesses that he or she committed adultery without being forced or under the influence of alcohol.
Eyewitness corroboration: If the accused person denies the charge, the accuser is expected to present four witnesses who have witnessed the actual intercourse (i.e., anatomically) while it was happening (i.e., not recorded or photographed). It is, therefore, almost impossible to convict someone of adultery. Unsubstantiated accusation of adultery also is punishable as an act of defamation. This punishment is to protect the honour of the accused and prevent the spread of unproven accusations.
- Li’aan (mutual cursing): Li’aan means “cursing” and in this context it is the action where the husband swears to God four times under oath that his wife committed adultery, and on the fifth time he calls for God’s curse upon himself if he is lying. The wife is given the chance to defend herself by swearing to God four times under oath that she is innocent, and on the fifth time she calls for God’s wrath upon herself if she is lying. This is only permitted when the wife is caught by her husband in an act of committing adultery beyond any reasonable doubt but cannot fulfil the criteria of proof based on witnesses. Islamic scholars state that the following conditions must be fulfilled in order for paternity to be accepted or denied via Li’aan (Bdaie’ Al Snae’):
Both husband and wife are autonomous;
If the husband is officially accusing his wife of adultery through a lawsuit and she denies it;
If he for the same reason requests to deny fatherhood of her child;
If he specifically requests to claim his right of Li’aan; and
If an authorised judge calls for it.
If the husband accuses his wife and testifies up to the fifth testimony, then he is protected from the punishment of defamation.
If the wife refuses to testify to protect herself, then she will be sentenced as guilty.
If the wife reaches the fifth testimony, then she is protected from the punishment of adultery.
The child is going to be called after the mother, not the father.
The denial of fatherhood is granted by a court order.
The couple are divorced with no permission to ever re-marry again.
Apart from this aggressive moral commitment from the couple, misattribution can never be granted. Even with the power of DNA testing, blood grouping, HLA grouping, photography, audio and video recording, etc., adultery and/or denying paternity would never be accepted under Sharee’a law. Laboratory paternity tests or any other logistics can only be rated as supportive evidence. They will never be regarded as leading evidence in an Islamic court of law.
In very broad terms, this case presents conflicting considerations in relation to telling the truth. The argument for informing the father may promote values such as truth-telling and autonomy but will clearly conflict with other very important values such as the confidentiality and well-being of the mother and daughter. The repercussions that may arise due to the release of such information are serious within the tribal context of Saudi Arabia. The society is extremely unforgiving with regard to women’s infidelity. The damaging consequences also will impact on the lives and social well-being of other family members. Thus, it is strongly argued that in this case the virtue of telling the truth may have the lowest priority due to the nature of the information, which may not only impact on a large number of people outside the case but also pose a threat to life.
Keep the family intact (as well as other family members and families that would have been affected);
Provide the child with the needed care that she would not be able to have outside this marriage;
Save or protect the life of any person(s) who would be affected, i.e., the mother or even the child;
Protect the dignity of the mother’s side of the family (i.e., her father, brothers and sisters); and
Provide counselling as appropriate.
This article was prepared for ETH 512: Advanced Selected Topic KAIMRC, Master of Bioethics, 2010. The main instructors were Professor Amin Kashmeery and Dr. Ghiath Al Ahmad, both associated with the bioethics section of King Abdullah International Medical Research Centre (KAIMRC), King Saud Bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia.