Islamic Center of Southern California

The Arguments of Islamic Law Rulings on Recent Medical Issues

Topic Thirty Five

The Human Genome Project and Its Legal Ramifications

Definition

The word "genome" is a combined form of the two words "gene" and "chromosome." It is used to refer to the whole set of bodies carrying hereditary characteristics.

The majority of developed countries collaborated on what they call the Human Genome Project. It was an ambitious project for which the United States allocated five billion dollars. It actually began in 1990 and was supposed to be completed in fifteen years, but it was formally declared as completed in an announcement made at the White House in 2001, that is four years ahead of schedule.

The outcome and achievements of the project include determining the location of every gene on every chromosome, find out the relationship between each gene and those which precede and succeed it, and decipher the code of every gene.

Undoubtedly, this is useful in discovering the causes of genetic disorders; learning the genetic composition of every human being, including the potential he has to be afflicted by certain diseases, such as blood pressure, heart attacks, cancer, and other diseases; determining the gene therapy for genetic disorders; and producing biochemical substances and hormones that the human body needs for growth. Questions have been raised, voicing apprehensions of the consequences of reading a human genome.

Some of these questions are: Is it in the interest of man to know things about himself which we now consider to be things for the future to reveal? How does one feel if he learns that he will die when he is about forty? or that he will have myoplegia around the age of fifty? Does an official authority or any employer have the right to ask, as part of the medical requirements for employment, to read a genome of the applicant? To what extent is genetic information kept confidential? Is it part of a person's privacy that is covered by professional confindetiality? If examination reveals a hereditary affliction, will that be a justification to reveal the secret to the person's relatives in order to get them examined?

The Legal Position Chosen by the IOMS and Its Argument

In its twelfth seminar in 1998, the IOMS ruled that the Human Genome Project is a community obligation, being a useful scientific undertaking that helps in curing patients. The IOMS worked out the legal controls for the protection of human rights in the actual performance of human genome tests.

The twelfth seminar's recommendations included the following:

Second: The Human Genome

The Human Genome Project that aims at understanding the entire genetic blueprint of a human being is part of man's effort to know himself, to explore God's laws of creation, and to apply the verse in the Glorious Quran which says, "We will show them Our signs in the horizons and in themselves" (Fussilat XLI: 53), and similar verses.

Since reading the human genome is a means to identify some hereditary diseases or the potential to be afflicted with them, it is a valuable addition to health and medical studies and to disease prevention and treatment. As such, this pursuit is a community obligation.

The first item of the recommendations, which sets general principles, says:

No research, treatment of a human being, or diagnosis related to the genome of a certain person should be undertaken before a very strict advance assessment of potential risks and benefits associated with such an undertaking is conducted. In the procedure, relevant rulings of Islamic Law must be observed, and voluntary, informed consent must be obtained in advance from the person concerned. When that person does not have the competence to express such consent, the consent or permission of his guardian should be acquired, while the ultimate interest of the person concerned should be sought. When that person does not have the competence to give his consent, no genome of his should be the subject of research, unless that research results in a direct enhancement of his health and the consent of his guardian is obtained.

Every person's right to decide whether he wants to be told the findings or consequences of any genetic test should be respected.

All genetic diagnoses, whether filed or intended to be used in research or for any other purpose, should be totally confidential. It can be revealed only in the cases specified at the third IOMS seminar on April 18, 1987, which dealt with professional confidentiality.

No person should be subject to any form of discrimination which is based on his genetic characteristics and which aims at, or results in, undermining his basic rights and freedom and his dignity.

No research or research application related to the human genome - particularly in the fields of biology, genetics, and medicine - should be beyond the scope of the rulings of Islamic Law and of recognition of the human rights endorsed by Islam. Nor should it reduce the basic freedoms or human dignity of any individual or group.

Islamic countries should enter the field of genetic engineering.

The IOMS should form committees concerned with the ethics of medical practice in every Islamic country, as a step towards establishing an Islamic association of medical ethics related to bio-technology. Islamic Center of Southern California